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Posts Tagged ‘medical insurance’

Even after my several years of experience with cancer it never ceases to amaze me how oblivious to the symptoms I can be.  Especially when they’re being waved in front of my face like a checkered flag.  I’ll get a bit more into that further on.  Otherwise I also wrapped up my chemotherapy sessions.  This, of course, means that I get the round of CT scans and MRIs followed by the traditional ‘wait and see’ phase that follows.  A full torso/abdomen checkup and a brain scan to cross our T’s and dot our I’s.  Last Thursday was the CT scan, Monday was the MRI.  I’m so very accustomed to these, though, that I choose to not worry and panic over the wait for results.  See, going through cancer you have to wait…a lot.  Blood tests, scans, samples from tumors and biopsies.  When I first started this almost twenty years ago the wait was sometimes two weeks to a month and it was absolutely excruciating.  Sometimes it’d be even longer.  Presently it’s typically a week at the most, sometimes shorter than that if my doctor wants to fill me in and move me through the process of things quicker.  He’s quite good at keeping me in the loop, even if it means Sunday night phone calls

So instead of fretting I move forward with my plans.

On Saturday, before my son set off to summer camp for the first time, we got to meet and partially pay for our newest member of the family.  She is a beautiful Great Dane that we’ve dubbed ‘Anora’.  All black save for a few white specs here and there and has, to my delight, dubbed me as hers.  If I sit in her vicinity she is my shadow, on my feet curled up,  or snuggling into my lap.  If I’m not careful I will have an over-sized lap dog in a year.  Oddly enough, I’m not too distraught about this.

Anora

Anora snoozin’ it up at my feet. Between her crate and my shadow she has also adopted the space under the Japanese Maple in the back yard as her outside ‘den’.

Before picking up our newest addition, legs and all (and her legs are exceptionally long!), Jenn and I took my youngest minion to the coast.  It was…admittedly exhausting but at the same time lots of fun.  Due to my recent need for pain killers I’ve formed the unfortunate habit of napping on car rides as the medication takes hold.  Luckily my daughter is very good at filling the quiet with song and ideas and kept Jenn awake on the ride home with her chatter.  It’s odd for me to be the passenger still.  We’ve been close friends since we were fifteen and it never occurred to me that over the hundreds of times we’ve visited the coast that Jenn had never been in the driver’s seat.  It was almost always me or our friend Leah.  The fact that I can’t just hop into my car and drive still feels surreal, something I’m not sure I’ll ever get used to.

That leads to the whole need for pain killers thing.  Back in April I had a run in with pneumonia that left a lot of water pressed between my chest wall and my lung.  The pain was pretty bad, but it slowly started getting worse over the few weeks after I left the hospital.  Both my husband and I figured it was the fluid not draining, as it wasn’t getting better like a rib break or a muscle sprain would.  Because of so many possible factors that could contribute to chest pain for me, my doctor and I agreed to hold off on a scan until after my latest chemotherapy treatment.  In the meantime the pain went from my shoulder blade and then down into the chest right under the bra.  Sometimes a constant ache, other times sharp stabs, but it was always present.  Sleeping comfortably has become near impossible.  So hydrocodone was what I was given to hold off until we could properly diagnose the issue.  I regret to say I need it daily now.  There’s no shame in having to take the pain medication, I know this.  I just detest having to rely on it with such frequency.  The alternative though … not so pretty.  I’m not the kindest person when I’m in pain, especially when the pain won’t go away.  I say things, snap things…on those closest to me when I’m in pain because all I can think about is how to make the pain go away.   Nobody around me deserves that.  So I’ll buck up, kick my pride in the butt, and take the medication. I hate it, but I hate how pain makes me act so ugly a lot more.

There was also a minor incident about six weeks ago where I had a major dizzy spell while waiting for my daughter and husband to get their hair cut.  It was briefly terrifying, giving me the impression at the time that I was going to experience a major seizure in the middle of the waiting room in front of several kids.  The only seizure I’ve ever had, back in February, I don’t recall anything from…so I had no idea what to expect if I started experiencing one.  Vertigo, dizziness, imbalance, my vision going wonky and my jaw locking up on one side.  I sat there, trying to carry on conversation with the lady next to me to help distract me from the symptoms…until I noticed my speech was starting to slur.  She noticed it, too, her expression going from friendly to confused…to a little concerned.  We fell into silence for a few moments as the symptoms passed and I was left with a bit of dizziness at best.   I fumbled through grocery shopping and then shortly after we took a quick trip to the ER to double check.  Nothing came back to mark that I’d had a stroke, seizure, or anything of the like.  The official diagnosis was, I believe, “It’s a thing…that happened?”

Probably one of my favorite medical summaries so far, one that had us joking with the doctor and nurses for a few minutes.  Is it weird that I get along so easily with hospital staff?

Do we really need to answer that question?

Ehh…likely not.

I’ve had a few speech problems since then, but most I had attributed to the pain medication.  Hydrocodone or any powerful pain medication tends to knock me out pretty quickly, so it wasn’t a surprise at all that I’d start sounding mildly drunk after taking it.

However, I really should start paying attention to my symptoms more.  My body, while I pride myself on knowing it really well, loves to throw curve balls at me.  I know better than to expect anything ‘textbook’ (my cyberknife therapy) to turn out as such.  I try not to be paranoid, but every time I turn around cancer finds a new and not so entertaining way of keeping me on my toes.

Now I know that I posted the picture of my first brain tumor back earlier in the year, possibly at the end of last year.  That’s right.  I said first.  It is my pleasure to say that the cyberknife treatment worked beautifully on that first tumor and it is now a bit of dead tissue shaped like a tiny jelly bean that is slowly fading away.  As it fades I’ve also noticed any vision problems I was having have also done the same.  Unfortunately it decided to invite a few more unwanted guests.

0627171542

This one apparently decided it had to be bigger than the last. Really, I could do without the internal competition. As if my body would listen, though.

Yeah, that’s one of three new tumors in my brain that have popped up.  Obviously the biggest.  When I asked what sort of side effects might happen with a tumor in that location, the doctor swiveled in his chair to look me over and asked, “Have you had any slurred speech or balance problems?”

Hindsight is always 20/20.  The good news for these is that they can be treated in the same way as the last, but we won’t be taking me off the steroids quite so quickly this time while we’re doing it.  My doctors came to the conclusion that halving my steroid dosage at the same time I had my cyberknife therapy last time was likely what caused my grand mal seizure.  As much as I dislike steroids…I think avoiding a seizure might be the dominant priority here.  This does mean no driving for a bit longer.  Who knows, maybe it’ll be a good Christmas present at this rate?  One can hope.  My van is getting pretty dusty and is in dire need of some cleaning.

As for the rest of the scan?  I can’t say it’s good.  Sometimes pictures are worth a thousand words, so let’s start with that…

0627171547

OK so a picture with scribbles in neon is worth a thousand words. Same idea, right?

Unfortunately the cancer has metastasized considerably.  There’s no way to pretty it up.  This means my current chemotherapy isn’t working and I will be facing radiation again.  Those who have been following my blog or that know me will realize that localized radiation is likely what got me into this mess in the first place.  We’ve surmised that it caused the breast cancer and the lung cancer even though it completely destroyed my Hodgkin’s Lymphoma.  But we’ve tried immunotherapy and just about every chemotherapy we can fathom.  Some have slowed it, some temporarily got rid of it…but every time you go through chemo your body starts to build up a resistance to it.  You can’t often do a treatment again after you stop, so our options are pretty limited.  Luckily the liver and kidneys are areas that haven’t been radiated before on my body.  While they are a cause for concern, it’s considerably less so than what’s going on inside my head.  My body won’t be worth a damn if my head no longer functions.  So…head first, and then the body.  I will be in months worth of radiation treatment at this rate, but it’s to be expected.

This leads to a question that some have asked me.  Have I been given a time?  No.  I don’t ask for one.  These therapies will extend my life for a while, but there’s no guarantee that they will rid me of the cancer.  Especially if you consider that my upper right lung is riddled with tumors (and not fluid anymore at all).  Those we’re not even sure what to do with just yet.

There is one chemotherapy that my insurance company has denied more than once, stating each time that we need to look into a chemotherapy that is meant for lung cancer treatment.  It doesn’t seem to matter that each time we’ve pointed out that we have done these therapies and that they aren’t working.  The beautiful picture up above dictates that pretty clearly.  You would think it’d be obvious, but when companies just look at the paperwork and not the person it’s hard to get the message through.  We’ve exhausted just about every chemo out there.

So now I have a court date with a lawyer in August.  I have the option to not show as it’s presented to the insurance board…but I plan on paying them a visit.  I am not a frail thing, ready to die.  I have two kids, a husband, a puppy and friends and family that need me.  I have a strong will to live and desire to at the very least see my kids graduate from high school.   If that means I have to show up ready to lay my situation down in vivid detail in front of a panel of strangers then I will do it.  In my experience showing up in person almost always gets the point across much more clearly than on paper.  I will not be written off as an unfortunate case or a sad story.

Don’t get me wrong though, I know this cancer will kill me eventually.  Ever since lung cancer started rearing it’s head repeatedly I’ve not since been under the delusion that I would live a long and drawn out life.  In truth I’m pretty sure I’ll never see my 50th birthday, the same age that my aunt died.  The same age my sister’s mom died.  Their deaths described as tragic and how they went too young at an age that I am almost one hundred percent certain I will never see.

That doesn’t mean I give up, though.  I have no intention of letting cancer dictate when I go for as long as I can help it.

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

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

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

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

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

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

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

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

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

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

Turns out people have thought of that, too.

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

All the stuff to make your nurse proud.

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

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

 

Med ID Bracelet

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What if…?

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

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When I first sat down to do a blog here it was with one main intention: to try and post something helpful and useful for those who are about to, are currently, or have gone through cancer.  Sure, I might throw in a little bit here and there about myself, but I’ve convinced myself that somehow I’m not going to let this become what my livejournal was back in college…a rant page.

Let’s see if I can follow through with that.

Overcoming Diagnosis

Chances are that if you are at this point you’ve already gone through a barrage of tests, scans, and possibly even surgeries to get here.  Once your doctor figures out that what the heck is going on with you is cancer, you’ve got to deal with the slew of emotions that follow next, not to mention planning all the treatments and arranging your schedule to make sure you can get them done!  Here’s a few tips to help you out there.

  1. Find help.  I cannot begin to stress this enough: Don’t do this alone.  Cancer can be pretty scary, but it’s a lot easier to handle if you’ve got somebody there with you.  Arrange for a chemo/radiation/surgery buddy.  For me at first it was my mother, she took me to every appointment and blood draw.  Later on it was a mix of my mother and my husband, as well as my best friends.  Having some sort of emotional support network is critical in keeping your sanity and lust for life thriving.
  2. Figure out what you need to do financially.  If you’ve got great insurance, awesome!  If you’ve got poor insurance, or insurance that covers very little of what you’ll be going through talk to your oncologist.  There are a ton of support groups out there as well as charities that are there to help, so please USE THEM.  This goes for those of you without insurance, too!  I’ll make a list at the bottom of this post of awesome contacts that I was given when I was diagnosed with breast cancer.
  3. Make a plan for your physical well being.  If you’re going to go through surgery of any kind, make sure you have somebody there to help you out.  Often times you won’t be able to drive after surgeries and depending on the intensity of the surgery you’ll likely need somebody there to help you take care of yourself.  Church groups, if you have one, often will have volunteers that will be able to help you with your needs, including making dinners for you to simply nuke or reheat so don’t be afraid to ask!  If you’re looking to do chemotherapy you’ll want to look into what the side effects of your treatments will be and make arrangements.  Will you be able to drive?  Will you lose your hair?  What sort of foods should you eat that will help chemo take less of a severe toll on your body.  Remember, chemotherapy will weaken your immune system, so anybody that visits should likely wear a mask if they’re sick or think they’ve been around somebody sick.  If anything, wearing a mask in public places is probably a good plan–you’ll look silly, but at least you won’t end up hospitalized.   Radiation, depending on how much it’s covering, is something that you’ll likely need more emotional support than a person driving you to and from.  It has all sorts of side effects that you’ll need to familiarize yourself with so you can properly prepare.
  4. DO NOT spend hours looking at medical sites offering information about your condition.  Looking up possible side effects or information about certain drugs or even looking up possible treatments—that’s OK.  But there are things on those sites that you should ignore.  The first is the statistics and chances of survival : IGNORE THEM.  These will only serve to depress, worry, and scare the living daylights out of you, no matter how helpful they intend to be.   The second are the user comments.  The internet is full of people who love to jump in and tell their own personal horror story on what happened to them.  Like the statistics they won’t be helpful to you!  Get your information from the site and then stop scrolling down!

If you take these steps they should at least help you on your path to medical treatment.  Just remember, you’re NEVER alone!  Don’t think you have to hold the world on your shoulders, you’re not Atlas for crying out loud!

Helpful Links

http://www.panfoundation.org/   The Patient Access Network Foundation.  Helpful for those who are struggling to pay for their copays and/or deductables.

http://healthwellfoundation.org/  HealthWell Foundation.  Also there for financial assistance.

http://www.patientadvocate.org/  These guys are awesome and are there for those of us who are facing chronic, debilitating, and life threatening diseases.  Whether you have insurance or not.

http://www.cancercare.org/  CancerCare, they’re more there for emotional support, but they also offer financial assistance for home and child care, transportation, medication, and lymphedema supplies.

http://www.cancercarecopay.org/  CancerCareCopay.org is there to help those who cannot afford their copays.

And finally…

http://www.cancer.org/  The American Cancer Society.  They have a wealth of information that will guide you in this process.  I’ve used and abused this site, you should, too.

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