jennethink

GOODBYE 2006

Goodbye 2006

I can’t say I’m sorry to see you go
That would be 12 kinds of horse hockey
You brought many surprises with you
Unexpected
But then again, that’s what surprises are.
If I’ve learned one thing
Among many
It’s that not all surprises are good
Or bad
And what is true today
May not be true tomorrow.
So goodbye 2006
Thanks for stopping by.
No hard feelings

CHEMO BLOW BY BLOW (HINT: IT TOTALLY BLOWS)

8:52
Walking into the waiting room I announce “Jenne's here!” and the girls behind the desk laugh.  They then mug me for my 20 dollar co-pay.  I feel better going into this treatment than I have for as many treatments as I can remember.  Some of that is the breathing, some is the length of time (FOUR WEEKS!) since last treatment and part of it is the Ativan.  I woke up in the middle of the night to pop another ativan or two and they really do take the edge off.  I think ativan should be given in all school lunches and prior to any political debate.  “Go ahead,” “No, you go ahead”  “ No, you!”  I think it would give us all something to be grateful for. And I’m referring specifically to the political debate application here.

9:02
The waiting room is covered with those clear plastic racks that hold information.  The information in these racks is, of course, about cancer.  Different types of cancer,  prostate cancer, bladder cancer, breast cancer (guess what color that brochure is?), brain, lung, pancreatic … there are a lot of cancers.  2 brochures are dedicated to lymphomas.  One for Hodgkin’s’ one for non-Hodgkin’s. Which, when you think about it, what a shaft the guy who discovered non-Hodgkin’s lymphoma got.  I mean what happened to calling it Bob’s lymphoma? Or Smitty’s Lymphoma?  Talk about living in a shadow.  I can just picture him trying for the first few months or so to brand it,

“I discovered a new lymphoma” 

“Oh you mean Hodgkin’s?” 

“No, another one, not Hodgkin’s, Smitty’s” 

“So it’s not Hodgkin’s Lymphoma.” 

“Well, yeah, but it’s called Smitty’s Lymphoma … after me.  Smitty.” 

“But it isn’t Hodgkin’s, right?  It’s like not-Hodgkin’s” 

“Yeah.” <sigh> “Not Hodgkin’s.” 

Which eventually was made into “non-Hodgkin’s” and that’s why Smitty is known for drinking too many boilermakers and pinching barkeeps on the bum and not for discovering a certain type of cancer. 

At least that’s the way I tell it. 

There are other pamphlets as well crowding the racks.  I’ve looked at most of them.  Most of them suck.  But they try.  And, according to my mother, it’s better than it was 30 years ago.  Then again, I don’t know if sheer amount of information should qualify as “better” information.  More is not always better.  Do I need to remind you of the buffalo hump?

9:07
As I noted, I’m doing this as I go along but there will be times when I cannot continuously type.  A few moments ago, for example, when after waiting for a handful of minutes, I was called back, weighed and sent into a private room where my vitals were taken (actually my vital STATISTICS were taken.  My vitals were left where they belong) and notes were made in my chart the size of a family bible.  A really big family with a really big bible.  The kind you could press entire wedding bouquets between the pages and still have room for early notes to the tooth fairy and multiple family snapshots waiting to be glued to the appropriate places.  I’m now waiting for Dr. Belt who will, as he always does, burst into the room like a bull at Pamplona entering the ring.  The room is not large and he will take up most of it.  I will take up the rest with my questions.

9:24
He bursted.  Just as I predicted.  Pretty quickly after that felt me up, declared me lump free and got to answering my questions. 

I have a lot of them.  I always write them down and he always answers each one.  Well, if you can include shrugging as an answer.  There is a shocking amount of shrugging that is done in that room.  Why is my hair coming back? <shrug>  When will I get my port out? <shrug>  why don’t you like San Francisco? <shrug>.  But it communicates and that’s okay with me.

After visiting with the doctor, we head back to the chemo room.  We pass by the nurses’ station and the appointment scheduling station which means, for me, I am stopped multiple times to say hi and answer the question “How are you feeling? Better?”  because apparently last time I was in there I looked as badly as a felt.  I know each of the nurses and schedulers and I love talking to them.  I love connecting with them even for just a little moment of time.  I like it that they know me.  I like it that they brighten when we talk, I like it that Dana, one of my nurses, checks with me to see how many treatments I have left when Dr. Belt is counting to make sure.  “I knew it was either 1 or 2 after this” she says “ONE!” I darn near yell and she laughs “I told him you’d know for sure.” 

Oh yes.  THAT I know for sure.

9:35
I’m waiting now to have my port accessed and blood drawn.  I haven’t cried yet.

9:37
Spook too soon.  As I was typing Mandy (new nurse) came by to get blood.  I was hoping that perhaps this stick wouldn't hurt.  Maybe this time, it wouldn't hurt.  I was wrong.  The thing about the stick in the port is it keeps hurting after the stick.  It hurts for a good 2 minutes which I know, doesn’t seem like a long time, but just for some empathy, reach down, grab YOUR vitals and squeeze really hard – for 2 minutes.  See what I’m saying?

I have to wait now.  Have to wait for the blood to be sent upstairs and counted.  They take a large amount of my blood out when they first access my port and throw it away.  I’m not sure why.  I’ve asked.  “We have to” is the response.  Not good enough.  Throwing away my blood is always upsetting to me.  I work hard to make that blood and they just toss it. 

9:50
I just noticed I’m shaking.  “Nerves?” asks the hub.  <shrug>

The saline they push into my port before, during and after each blood draw or medicine infusion tastes horrible.  It is odd to be able to taste something that doesn’t go into your mouth but I can.  As soon as they connect the syringe to my port line and begin pushing I can taste the vile stuff.  In high school we dissected cats for Advanced Biology – the cats were preserved, obviously, although I would not have been against finding some and doing what needed to be done.  The smell of the preservative is exactly what the saline tastes like.

Like rusty tin
Like rotten soap
Like ozone
Like earwax

Or like a cocktail made from all of the above.  Served warm.  In a dirty sweat sock.

It’s nasty and I hate it and I’ve had enough of it to drown a fish.  Recently, we’ve discovered a partial solution for the taste of saline.  We suck on tootsie pops during treatment.  I say we because the hub sucks on one too.  Sympathy pop.  Nothing wrong with that. 

9:58
Still waiting for the blood test to come back to see if my counts are high enough for treatment.  This is one of the maddening parts of chemo.  The waiting.  There is nothing to do but wait.  My appointment was scheduled for 9:00.  We arrived early – 8:50.  Even with the reduction of one of my drugs today, we’ll be here awhile.

10:10
Blood tests back.  WBC are good.  Treatment will begin …. uh … you know, when it begins ….

10:23
Still waiting

Every chair is full in here today.  We seem to be short of nurses. 

I’m going to be getting ativan with my treatment today.  So I don’t know how much I’ll be able to document.  There will come a point when I will want to sleep.  When it will feel like little squirrels will be sitting on my eyelids and sewing them shut and lullabies will be drifting in and out of my ears.  It is very hard to resist sleeping when they push the ativan.  It works quickly and although I really want to document everything, the siren song may be too much.  We’ll see.

10:36
Ativan.

10:42
Anti-nausea meds started

10:57
Solumedrol – a steroid is given.  No chemo meds yet.  Isn’t that amazing? 
“What time is my appointment?” 
“9:00” 
“What time do you want me there?”
  “8:45”
“What time am I scheduled to start chemo?”
“9:30”

Hi, 11:00!

Patience.

Well I’m going to nap a while.  Looks like I’m not going to make it or be able to keep track.  I’ll have Steve keep track for a while.

11:27
Adrymycin (big red awful drug)  is complete.  It is pushed in, not hung.  This means the nurse sits beside me and slowly forces the drug into my body.  She got some on my pink jacket. 
I can already feel the effects of it.
Gravity
That feeling when you are taking off in a plane and your whole body feels like it is going to sink through the bottom of the seat, the luggage compartment and the skin of the plane.  That heaviness … that’s what it feels like.

Nausea.  A clutching in my gut.

I have to also note that I am at this moment so much less interested in writing things down.   A weariness has taken over.  Things that were funny 10 minutes ago, aren’t funny now… and laughing is just too much effort.

It is amazing how quickly it happens.

I put on my ipod.  Nothing sounds good. 

Every so often I have to stop typing so I can raise my arm above my head like I’m asking a question.  I do this because Mandy, my nurse, is slowly pushing Vinblastin and it has to go in over a 5 to 10 minute period of time.  Can’t go too fast, it can make you sick.  Can’t go too slow, there are people waiting.  I have to raise my right arm because every minute or so we need to check for “blood return” meaning the line into my heart is flowing both ways … in and out.  This can be an issue.

When this push is done, she’ll wash it with saline again.  Flush it.  I find it interesting this is the same terminology we use to empty a toilet.  I have a pop handy.  Raspberry this time.

Still takes like crap.

11:49
Still waiting to start my 3rd and final med today.
There is a discussion going on right now about it.  The last drug is my DTIC which takes about an hour to drip.  I’m not sure why it is taking so long today but it is.  Maybe I’m just more aware of it. Plus I have a toothache that I can’t get fixed until my chemo is done in a few weeks.  And that’s making me testy. 

11:52
Pump is being hooked up.  It normally runs somewhat silently.  Today, thanks to I don’t know what, it sounds like this:

be beep beebeeebee beeppp beep beep bbepbeepbeepbeep be beep beep beep

I’m totally expecting the aliens from close encounters of the 3rd kind to show up in response.

I’m getting nauseated. 
Too many tootsie pops?

Beebeebeeep beebeebeep beep beep beebeebeep.

11:55 – hooked up ready to go.

OP! fooled ya … bebebbeeep …. Air in the line.

Okay we're back in biz.  One hour and then I should be done.

Nap time.

12:04
I can’t get comfortable.  My skin feels like it will tear if I move.  I ‘m aware of my shoes. So heavy on my feet.  I'm too hot.  It’s so bright in here and ugly.  I have a horrible taste in my mouth.  The tootsie pop only can reasonably be asked to do so much.

My shoulders feel like they are going to pop out.  My bones feel like they are being rolled in giant fingers … rolled and squeezed and messed with.  I feel messed with. 

My emotions are building, rolling, filling … I can feel irritation and anger.  I can feel the desperate pull from the poison .. I can FEEL it tugging me away.  I'm disappearing.

12:39
Chemo sucks

1:06
Flushing.
Saline.
Almost done.

1:10
Put 11 in the books.

CHEMO TREATMENT NUMBER ELEVEN (GOD WILLING AND THE LUNGS DON'T RISE)

Today I can officially count the number of treatments left on two hands … WITHOUT HAVING TO USE MY FINGERS!  That’s right.  I only have two treatments left.  I hesitate getting too excited because if you’ll recall, I only had two treatments left 4 weeks ago and got shanghaied on the way to my last treatment and ended up in the Hotel St. Luke’s for 6 days. 

My breathing is now almost normal. I can talk without those long pauses I was using before which I like to think gave my stories some false sense of excitement and adventure and I tried to huff them out.   “So….. on the       way      here      I was                 tying                   my              ,,”  (Yes!??  Yes!  Tying your???? Your???)    “…..shoe”  (HER SHOE!!! IT WAS HER SHOE SHE WAS TYING!).  But in reality I think only made my stories all that much more annoying.  No need for affirmation here, I got it. Thank you for not pointing it out on a regular basis.  I’m still a little short of breath when I have to exert myself by say rolling over in bed or yelling at my mom to make me more hot chocolate but other than that, I’m almost normal. 

And that’s really something.  Even if these steroids do give me a buffalo hump, I will Quasimodo my way around town just inhaling and exhaling like I’m drunk on something.  And if I have the hump, chances are I will be.

Before we get there, however, I have to face today.  Today I will walk in that room, again, and take the poison, again and feel like I’m being dried up and all humanness swept away from me.  I’m taking my laptop with me.  I’m going to do my best to chronicle what happens during treatment.  I think there are things I forget, things I block, things that could be meaningful that I’m letting slip away.  I want to try to capture them.  We’ll see how I do.  Since I will only be taking three of the four medicines I usually take (no Bleomycin because of the lung trouble) my treatment will be at least 67 minutes shorter.  67 minutes.  I know that because I know how long it takes to drip each drug into my body.  I may not be able to remember the birthdays of close friends and relatives and I may forget the name of the Secretary of State, but by gum by golly I know how long Adriamycin takes to push into my veins. 

It is so archaic, barbaric this chemotherapy.  I’ve likened it to blood letting and leaches.  It doesn’t seem right that we should almost have to kill a person to save them.  I know not all chemos are as difficult as ABVD and not all schedules are as taxing as the one I’ve been on but if you think about it, it is a little crazy.  You have cancer.  We can’t kill JUST the cancer.  So we’re going to poison you, as much as we possibly can and cross our fingers that the Cancer will die and you won’t.  Yeah.  Yeah, that sounds like a great idea.  And then the next time I have a messy kitchen I’m going to start it on fire juuuuuust enough to burn up all the dirty plates. 

There’s got to be a better way.

PHYSICALLY

Exhausted.  And somewhat fat, 
I can feel part of my belly taking a nap on another part of my belly,
And that’s not good.

Once my sister owned a bathing suit,
BUDWISER it said, in vertical letters when she stood,
When she sat,
It was illegible.

She would tell you this same story.

The list of side effects of a certain drug I’m taking
Include buffalo hump,
Which, frankly, is my least favorite part of the buffalo,
It also includes facial hair,
Which I’m not so keen about either.

At times I wonder if I’ll be able to recognize myself,
When this has ended,
Will I look in the mirror and see
Me
or Dom DeLuise.

TWAS THE DAY BEFORE CHRISTMAS AND ALL THROUGH THE HOUSE, NOT A CREATURE WAS STIRRING BECAUSE THEY COULDN'T WALK WITHOUT TRIPPING OVER SOMETHING

There is an obscene amount of presents under our Christmas tree.  So many that I fear when Santa stops by he’ll wonder why he’s worked his little elves’ little fingers to their little bones all year when obliviously he could have let them drink rum and have orgies up until Dec 24, stopped by our house first and still would have had enough present for all the good little boys and girls.  And some of the rotten ones too.

I tried to start early this year (read: Dec 15) and do a lot of my shopping online.  And I did.  I enjoy online shopping.  The only thing is, I STILL went out and did regular off-line shopping.  There were a few things – like underpants – that needed to be purchased and I didn’t think it necessary to incur shipping charges for them.  So I went out.  And then Target 19.99’d me to death and well here we are with enough presents for Cox’s army.

In the past, I’ve had a philosophy about Christmas.  I don’t like to go overboard.  I know this may seem all Grinchy of me but really, who needs all that crap?  Please do not let that previous statement stop you from sending something to me overnight if you wish.  It’s just I sort of like the idea of exchanging one meaningful gift, maybe a couple fun ones and let that be that.  And usually we stick to that. 

This Christmas however, Cancer Christmas, we’ve all lost our ever-lovin’ minds. 

Please note, this is only ONE SIDE of the tree.  Oy.

GREAT EXPECTATIONS

At the beginning of all of this I had this unreasonable desire to do this well.  I had high hopes for myself- this is not new. I’m all like that ant and the rubber tree plant Laverne and Shirley always sang about.  I like having high hopes.  Nothing wrong with that.  But I also had high expectations.  Expectations, in my world, are different from hopes.  Hopes are “nice to haves” that if they come true well, good for you!  But if they don’t come to pass, that’s okay too because seriously, an ant against a rubber tree plant?  Come ON!  Expectations on the other hand … expectations are, well, expected.  I don’t much like expectations because there is too much room for missing them.  They are like this teeny tiny target waaaaay out in the distance – nearly impossible to hit.  And unlike hopes, if you don't hit your expectations, there is disappointment.  What’s worse is expectations lead to the shoulds.  And I realize now, when I was diagnosed, I fell victim to the shoulds.  I should be able to do this well.  I should learn a lot of new stuff.  I should be able to communicate how I’m feeling. I should be an inspiration.  I should have a good attitude.  I should put a smile on my face. I should be able to keep my business going.  I should be able to keep up with the housework … I mean think of all the time I’ll save not having to shave or do my hair.

It is hard to avoid the shoulds in situations like this.  I hate the shoulds.  I prefer “could” to “should” as in “I could have cleaned the house” or “I could have responded better to that.”  “I should have cleaned the house” or “I should have responded better.”  is just too judgmental.  “Could” implies there was a choice.  I like could.  But you know what they say,

should happens. 

So I have a big case of the shoulds and I don’t know what exactly to think about this.  Maybe it wouldn’t be bothering me so much but let’s be honest, I’m missing the expectations target. I’m aiming, I’m trying, I really am, but my arms are all shaky and it’s dark and the bullseye is farther away than I ever thought and someone has rubbed Vaseline on my night vision goggles.  I’ve rarely in my life fallen short of my expectations.  But let's be clear about something, this is not because I’m SuperWoman or anything close to her. It is just because I don’t have many expectations for myself.  That may sound odd but I don’t put a lot of pressure on me.  As I rule, I think I have enough going on.  This was true BC (before cancer) and is certainly all the more true now.  And yet, with this, I found I was, and still am in many ways, measuring how well I’m doing this.   I think I’ve told the story here before of the time my father and I built the railing for our porch.  It was a pretty typical porch railing, a top horizontal piece, a bottom horizontal piece and a bazillion vertical pieces in between.  As the story goes, instead of using a tape measure to mark each vertical piece prior to cutting, my father and I just used the piece before it. Lined it up, marked it, cut it and used that new cut piece to line up and measure the next one.  Seemed a good idea at the time, by the end, however, there was a LARGE variance in the length of the vertical pieces.  Turns out it is not a good idea to use the one before it after all.  Each piece got just a liiiiiiiiiittle longer than the one before it.  The lesson here?  Don’t measure yourself against what’s next to you.  You won’t get an accurate picture.  And that’s sort of how I try to live my life.  I don’t look around me and measure myself against other people.  At least I try very hard not to.  It’s okay with me if you’re better at that certain thing than I am.  I’m good at my own things.  I don’t get my self-worth from putting my back up against yours and seeing who’s taller.  (I do, however, like to see who is WIDER).  But, with this whole cancer thing .. I’ve done a lot of comparisons.  Which now that I think about it doesn’t really make sense because I don’t really KNOW anyone else going though it right now so what am I comparing to?  Myself?  My father?  Oh lord, is this all about measuring up to my father?  Could I BE more psychobabble?

I guess what I’m saying is, I think I thought I’d be one of those people that others would look at and go “MAN!  She’s doing this REALLY WELL!”  and MAN, I’m just NOT.

Even now, as I type this, I find I’m editing.  Don’t say that!  I’m saying to myself.  You sound weak!  You need to be strong!  Don’t be negative.  Tell them the good stuff.  Keep it positive. 

I have a friend who is all balls-to-the-wall about a positive attitude.  He and I have discussed this many times.  I know he supports me and I know he does his best to understand me.  At the same time, I know there is part of him that thinks I let too much negative energy in.  I know there is a flicker of “buck up little camper” inside of each word he says and I know if he were going through it, he is confident that he would maintain a “100% positive attitude” no matter what.  And isn’t that easy to say?  When you are healthy and your lymph nodes aren’t trying to kill you and your pee doesn’t stink like chemo.  Yes.  Very easy to say then, I think. 

There is truth in what he says.  And I get that.  I, too, value a positive attitude.  But I value reality more.  And sometimes I feel like a positive attitude drowns out a realistic view.

The reality is I can have a positive attitude and still feel bad.  I'm not sure anyone really gets this.  It is possible to be positive and still tired.  Positive and sick.  Positive and vulnerable, open, sad, weary, even angry.  Positivity is good.  But cancer ... cancer is NOT good.  Cancer is very real and very raw and the reality is it is not pretty.  The reality is ugly.  And I refuse to hide it.

There is a book out there somewhere called “the girlfriend’s guide to pregnancy” or some such thing and supposedly it is the real story of being pregnant.  And apparently, according to the author, pregnancy isn't all glowing faces and gentle loving kicks from the inside - achooie coo. When I was knocked up, all my friends told me to get it because “those other books don’t tell you the real thing”.  I can see why this book would be a best seller.  Pregnancy is one of those mysteries of life that you don’t really GET until you go through it.  Plus there are all these expectations from other people about how you should feel, think and handle it.

I think I’m going to write “the girlfriend’s guide to cancer”.  I’m going to fill it with the truth.  There are many aspects of cancer – some of them are downright hilarious and some are 100 pounds of awful and they all deserve to be told.  And I don’t think anyone should have to go into this without really knowing what it can be.  And I think everyone who goes through it should know that there is at least one person out there who understands, who gets it, who will tell you what you are feeling is REAL and you don’t need to prove it to anyone and you can make it and even if you can’t, that’s okay too.  You, your cancer, your feelings are VALID. 

And you don’t have to do it well.  You just don’t.

AND THEN GUESS WHAT HAPPENED?

So, as you know, I went into the hospital last Wednesday.  With great effort, my mother waited until Saturday to hop a plane.  While sitting in the airport in Orlando, she started to feel a cold coming on.  You can imagine her angst.  In no way did she want to come all the way to Kansas City just to make my nose run, however, she wanted (she would say “needed”) to be by my side while I rolled my eyes at her.  It’s just not as effective over the phone.

Since I was still being pumped full of antibiotics, I told her to come on, not to breathe on me and we’d all be okay.  So she did.  She arrived wind-blown and sniffley.  She began taking medicine Saturday night.  Sunday she wasn’t better.  Monday she wasn’t better.  Tuesday she DEFINITELY wasn’t better.

Yesterday I requested she go to urgent care.  Actually I insisted.  She was much worse.  Either that or she’s hiding a barking seal in her bra.  So I asked, then told, her to go.  Part of it (most of it?) was concern for her.  But then again, I cannot afford to get sick.  I mean I’ve seen me when I’m sick and I REALLY play it up for all it’s worth.  And after all, I JUST got home.  So even though she tried to tell me she was better, my sister and I out-voted her and off to urgent care she went.  It was role reversal all over the place – big time.

My sister drove her to the urgent care and explained the situation to the nurse.  She explained our sense of urgency and how maybe sometimes we would let something like this run its course.  However, in this case, with a person at home with “issues” we need to aggressively attack this.  The nurse said she understood.  She took vitals, history and left the room.

The doctor entered with this line, “Well, I understand you have a lot going on so I’m not going to insist you be admitted to the hospital today.”  He was not joking.  Apparently she was sicker than any of us thought.  Couple that with a mistake in choices of medicine and a blood pressure reading of two million over eleventy billion and she just about landed herself in my little home away from home last week.

So that’s where we stand, or in her case, lie in bed.  She’s gotten on some strong medicine and we hope to see improvement soon.

Can you just not WAIT to see what’s coming next or what???

Not wanting to leave us on a down note, here’s a completely unrelated and somewhat fun fact: I think my hair is coming in curly.  I know, lame.. but it’s the only thing I can come up with at the moment.

TEACH YOUR CHILDREN WELL

I hesitate telling you this but I went out Christmas shopping yesterday.  I hesitate because if I were you I’d think “Christmas shopping?? Weren’t you just in the hospital Monday??” and yes I was.  But time and Christmas waits for no man and certainly will not wait for me just because of a little toxicity.  Maybe it wasn’t a decision the three wise men would have made but I needed to get my own frankincense and myrrh to pass around.

So I went.  I took precautions – stocked up on the purell, borrowed my sister’s gloves so I wouldn’t touch the germy door handles and wore a mask.  This was not easy.  It is difficult to look different in this world and even harder to look sick.  My friend HOLLIE was at the mall with me in October and after walking around a bit and sitting down at the food court she said “Wow, you get a lot of attention!” and she’s right. And I welled up.  Usually I can ignore it or smile at people who stare but sometimes it all gets to be too much.  Sometimes the staring and whispers are so heavy.  And I don’t get it.  I know I look different.  I know it is unusual to see a woman without hair.  I expect people to look.  But looking and staring … those are very different things. When I’m feeling well (when is that again?) I don’t really mind or notice.  Lately, however, I can't go anywhere without noticing being stared at.  For months I tried to respond to each stare with a smile and nod.  I tried to chin up.  I tried to show everyone how it is okay .. I’m okay .. you’re okay … all God’s children are okay.  Go ahead and look if you want! I’m totally okay!  See me smiling! I’m rubber and you’re glue!  But lately.  Ugh.  All I can think is it is not my job to inspire you or do this well for you.  I don't have it in me to make you feel better about me by responding to your stares with smiles and your "how you feeling?" questions with 'good!"  or some other falsehood.  I’m not doing good.  I’m falling apart.  I am barely holding on here.  And here’s the thing, you better get used to it.  I mean, the way science and medicine is advancing we sickies are allowed to be out among you.  They don't lock us up or quarantine us.  They want us to live somewhat ordinary lives.  They TRY to allow us some sense normalcy. So we're out there.  We have bald heads and we use canes and we wear masks - not because we're contagious, but because YOU are.  So you better freakin’ get used to it.  Learn to deal with illness because if you think you're getting away without facing it your dead wrong.  Skittish about it?  So what.  Uncomfortable?  Get over it.  Don’t know what to say?  Afraid you’ll say the wrong thing?  Worried I’ll “get some cancer on you?”  Come on.  Grow up.  Wise up.  You don’t have to be comfortable to be nice.

Okay, rant (somewhat) over.  But I want you to understand how difficult it is for me to be out and about these days.  Especially in crowded stores where I draw even more attention and it is increasingly difficult to fade into the background.  My hair IS starting to come back in so I MIGHT be able to get away with just a few looks except the mask ensures lots of stares and on top of that, yesterday, I couldn’t walk without getting terribly winded so I had to use one of those scooter things.  Yeah, I know.   Nearly bald.  Gloved.  Masked.  Scooter. 

Go ahead.  You can laugh.

Or you can shift in your seat and feel all uncomfortable and awkward.  You’d be in good company.  What’s worse than being stared at?  Being ignored.  Made to feel less than.  Like a thing.  Not a person at all, an inconvenience.  For the first 10 minutes or so in the store I tried to smile behind my mask.  I said “Merry Christmas” as I scooted past.  I brightened my eyes at people and said “oh excuse me!” when I accidentally cut them off as I vrooomed by.  But it fell on deaf ears and dumb heads.  So I gave up.  I put my head down and stopped making eye-contact.  Not worth it.

But just as I was losing all faith in people, a beautiful thing happened.  Among the throngs of people in the store as a man with his son.  The son was about 9 or 10.  The man had an eye patch.  I was totally in their way with my scooter and mask and I what’s worse is I didn’t notice them at first because I was distracted.  When I finally faced front I saw I was blocking them and I tried to move my scooter backwards – at the expense of everyone’s ear drums within a 50 foot radius.  Man those things BEEP when you back up!  But as soon as the man noticed I was trying to get out of their way he put up his hand.  “Don’t move,” he said “You are perfectly fine.  You are not in anyone’s way.”  And he waited for the crowd around me to clear.  Just waited patiently with his hand on his boy’s shoulder.  Once a path was opened, they moved close and snuck around me in the aisle.  This would have been enough.  Plenty, really, to make my day.  But just as they were passing, the boy looked right in my eyes peek-a-booing over my mask and said “Hello, ma’am, it’s nice to see you,” and smiled this big beautiful toothy smile and my whole world – MY WHOLE WORLD – was restored.

I could have kissed them both. 

People, please, just say hi.  Smile.  Teach your children to smile at people who look and feel different.  Maybe this man has taught his son this beautiful, simple skill because of his own difference.  Maybe he knows what it is like to have people look, look away, look again.  Maybe he understands that sometimes, it is just too much.  Too much.  And maybe that’s why I can picture him often in his son’s life pulling him aside and saying “Be nice, son.  Say hello to people who look different.  It’s okay to smile and ask questions.  Don’t be afraid to reach out.” and, “I’m proud of you.”

I will never forget that man and that boy.  Angels, both of them.

You who are on the road
Must have a code that you can live by
And so become yourself
Because the past is just a good bye.

Teach your children well,
Their father's hell did slowly go by,
And feed them on your dreams
The one they picked, the one you'll know by.

And you, of tender years,
Can't know the fears that your elders grew by,
And so please help them with your youth,
They seek the truth before they can die.

...just look at them and sigh and know they love you.

-Crosby Stills Nash & Young

WHEN WE LAST LEFT OUR HEROINE ...

Admission to a hospital goes smoother than you think it will.  Maybe that’s because most of my reference is from years and years ago when my father would have to be admitted.  Maybe things have improved in all these years, gotten more efficient.  Or maybe the view through 12 year old eyes is different.  Regardless, by Wednesday noon I was tucked between stiff white sheets and answering questions between pants for air.  My oncologist – who ordered the admission based on the x-rays but hadn’t seen me yet - came by around one o’clock and listened to my lungs.  Within seconds he was ordering more tests.  “Pleurisy” he mumbled and “Get an echo and EKG on her.”

The EKG was fine.  The echo was fine.  My heart was in tip top shape.  And the rest of Wednesday passed .... grinded by really.  Each breath was a struggle and walking to and from the bathroom left me trying to guzzle air like it was whiskey and I was a drunk on a bender.  I couldn’t eat.  I couldn’t sleep.  I couldn’t           talk        without        long          pauses and in many ways, I felt like I was just holding on.  Barely holding on.

Thursday my oncologist came early.  He listened to my lungs again.  He ordered a high resolution CT scan.  “It’s difficult to tell what’s going on with just an x-ray,” he said.  And since a high res CT requires no more effort on my part than laying still for about 3 minutes, and since laying still was about all I could do anyway, I had no apprehension about the test.

30 minutes after my scan a pulmonologist walked through my door.  He introduced himself and began asking questions.  About 2 minutes into the questions I began to get a buzz in my gut.  Something was not right.  These were not “get to know you” questions.  He was looking for something. 
What kind of work do you do? 
What kind of work have you done?
Where are you from?
Where have you lived?
Have you traveled?
Where did you travel to?
Any lung problems in your family?
Is your mother alive?
Is  your father alive?
What did he die from?

After each question he would nod slightly and look down.   He had no pad with him, no chart.  He wasn’t taking notes.  Clearly he was searching – waiting for a ding to go off in his head.  After the questioning turned interrogation he nodded a few more times and then began. “We looked at your CT scan.  It doesn’t look like pneumonia.”  This is when things started to get a little blurry.  Not pneumonia?  What do you mean not pneumonia? I’m in here for pneumonia.  I’m going to get tons of antibiotics, I’m going to get better, I’m going to get out of here.  While I furrowed my brow, he continued, “Pneumonia is usually on one side.  Usually in one area.  What you have is much more … diffuse.”  I had to think for a minute what diffuse meant.  I couldn’t quite convince myself it was a synonym for happy.  He went on to explain that lung conditions are difficult to diagnose.  Apparently you can’t just look at them on x-ray or other scans and just know what it is – you can only know it’s wrong.  He told us he needed to consult with another pulmonologist.  He asked again about my travels and work.  “You’ve never worked in health care?” he asked.  I suddenly remembered the handful of years I worked for a physician.  Somehow that had slipped my mind before.  “Ever have a positive TB test?” he asked.  TB?  Tuberculosis?  He’s asking me about tuberculosis?  What’s next?  Bubonic plague?   

He left my room and my sister, The Hub and I all sat in silence.  At some point one of us said “huh.” and we all agreed.  I tried to lighten the mood with some lame joke.  It fell flat.  Tough room.  My sister grabbed her computer and began looking up TB, SARS and other lung diseases.  She quickly put that away.  There was nothing to do but wait.  Jeepers, I thought.  How much worse could this get?

Dr. GloomandDoom returned in 30 minutes with another pulmonologist.  This new doctor stood by my bed and told me again how pneumonia is usually isolated in one area of the lung and my issue was not isolated.  She didn’t use the word diffuse.  Instead she told me it looked like someone had taken a cotton ball and dabbed paint all over my lung tissue.  “We don’t know what it is.  But we’ve narrowed it down to three categories.”  She used her fingers to count them off.  She laid her right index finger on her left thumb and started, “One,” she said, “it could be some sort of infection.  This includes fungus, molds, viruses and other unusual conditions. Sometimes infections or viruses can lie dormant for years and only when your immune system is compromised will they come out.”  I nodded.  Okay.  Infection.  Got it.  She moved from her thumb to her index finger to indicate the second option, “It could be bleomycin toxicity”  I knew about this one.  Bleo is a drug in my regimen.  It can be rough on the lungs.  A small percentage of people can have a severe reaction to it.  However, my oncologist had been watching for this all along.  I nodded to let her know I understood about bleo toxicity and she wasted no time moving to her flip-off finger and telling me the third possibility.  “It could be your cancer metastasized to your lungs.” 

I remembered being hit in the stomach with a basketball once.   I remembered 30 minutes prior asking how much worse would this get.  I remembered my fear of drowning and how for the past few days I’d felt like I was being held underwater.  I thought of boxes in the basement that needed to be gone through.  I pictured my mother-in-law who died from COPD, a lung disease, and how frail and desperate for air she always was.  Names of people I love floated through my head.  I remembered my x-ray and how I thought my heart was big and beautiful and now … now I realized that wasn’t my heart at all. 

More tests followed.  Including a bronchoscope or as I like to call it an “up-your-nose-with-a-rubber-hose-eoscope”.  This I was put out for.  However, I didn’t go quietly.  It took four times the normal amount of drugs to knock me out.  FOUR TIMES.  Now THAT’S something to be proud of.  While they did the scope they also did some lung washings (which is good because frankly, I haven’t washed those things in years)  and a couple of biopsies of lung tissue.  I won’t waste anymore of your time or make you wait the 4 days that we had to wait – the cultures were all negative.  The biopsies were negative.  No TB, no SARS, no cancer. 

It turns out to be bleomycin toxicity.  The really good news is that it is treatable.  and not JUST treatable but all signs point to that I’ll get back anywhere from 95 – 100% of my lung function.  Yes, Virginia, there is a Santa Clause and he rides in on a big tank of oxygen and steroids.

They finally began treatment for the bleo tox on Sunday.  Steroids.  Loads and loads of them.  By Sunday night I was off my oxygen and walking unaided to the bathroom.  Not only that, but I would swear in addition to the steroids, they injected me with chipmunk genes.  For the first time in weeks, I have energy.  But not the useful kind.  My biggest accomplishment these days is twitching. 

I’ll be on the steroids for 4 to 6 weeks.  Each MOMENT I feel like I’m getting better.  It was important to remind myself yesterday that I wasn’t completely well – but being able to breathe was like … well a breath of fresh air.

Still two treatments to go.  But let’s consider this hurdle successfully jumped.

All is well.

UPDATE AND WHATNOT

Where in the world do I start? 

How about a stream of consciousness?  Not promising coherence by any means.  Just consciousness – and that may be pushing it. 

There is much to update.  I will do my best to bring us all up to speed.  We’ll see how it goes.

First, and probably most importantly, they sprung me from the joint this afternoon!  I feel all Andy Dufresne, having dug through walls and crawled through raw sewage and now I’m standing in a river with my arms stretched out tasting freedom for the first time in (what seems like) forever.  After 6 days and 5 nights and enough fluids to make Noah nervous, I’m sitting at my own dang house in front of my own dang computer and no longer have to send emails from my blackberry with keys the size of ant droppings.  This will be a relief for many of you as I know you are tired of reading sentences like, “nezt I shield br geyying a trst on my lubgs”  which is humorous only when you are drunk.  And I’m not nearly drunk often enough these days.

I went to treatment Wednesday fully expecting to get it.  I was having major trouble breathing and noticed around Monday I was running a fever – and the fever was ahead by miles.  However, contrary to what some of you thought, I still believed we’d stay on schedule.  Since for the past couple of weeks I felt like I was breathing though play-dough, a chest x-ray was ordered prior to treatment early Wednesday morning.  I carried the films from the imaging center to the treatment center.  You know what this means – I had ample time to look at the pictures of my lungs.  First let me say, I’m quite smashing in black and white.  Next let me say that there was much more white on the films than there should have been.  It was confusing.  I know what a lung is supposed to look like on x-rays because, you know, I’ve seen my fair share of ER and Chicago Hope and I firmly believe this is one of the benefits to living in a country with 7.2 TVs in every household – you are sure of two things, 1) what x-rays look like and 2) your Miranda rights – God bless America.  And NBC.  So there I am looking at my x-ray and The Hub is like “what’s that?” and I’m all like “I think it is my heart.” And he says “It’s the size of a football” and I’m all like “We knew that already.”  Awww ... cue birdy sounds and big puffy hearts and flowers popping from my sweet face.   But despite the fact that I really am quite sweet with a heart FIGURATIVELY the size of most mid to large-size sporting equipment, he was right, it didn’t look correct.  There was whiteness where there should be blackness and all I could think of was I had somehow swallowed fog on the way to the x-ray or maybe that big lead apron they wrapped around my ovaries somehow hiked up on me during the zapping.  “Maybe all that white stuff is my liver,” I said.  “That makes sense,” Hub said “I mean you must have one like thiiiiiiiiiiiis big.”  Har-de-har, everyone’s a comedian.  Eventually we held the x-ray up to my chest since it was life-sized and all and sure enough, that wasn't my heart or my liver.  That white hazy stuff was something else.  “Something else” was all I could come up with since I haven’t snorted marshmallow fluff since college.  But still, for some reason, I wasn't too worried.  I mean really, what did I know about x-rays?  Maybe the ones they show on ER aren’t really a good rule of thumb. 

Maybe.

After a short wait I was called back to the chemo room. I handed over the films and was once again stabbed in the port.  Blood was drawn for counts and while we waiting to see how high my white blood cells were we met with the nurse practitioner.  She listened to me.  Then to my lungs.  Then looked me dead in the eyes and said, “That isn't right” and left the room.  Next thing I knew I was headed to the hospital.  Diagnosis: pneumonia.

This, to me, was a major set back.   With only have two treatments left and to be so close to the finish line only to have some jerk come out of the stands and trip me, well I have to say I was not a happy patient.  At the same time, there was a certain level of relief.  For months now I've had trouble with my breathing. After each treatment, it has been painful to inhale deeply.  At first the pain would last a few days, easing off after two or three days and disappearing by day five or six.  However, as with most things chemo, it was getting worse.  By this last treatment, there was no relief in the two weeks and in fact, it seemed to be getting harder to breathe instead of easier.  I had a certain feeling like I was being held underwater.  I wanted to gulp air but no matter how much I gasped, I never felt fully full.  Tuesday before treatment in fact, I had a bit of a coughing fit that turned ugly.  I wasn’t able to get air and each pant only felt like an opportunity for someone to shove cotton in my throat.  It was frightening and a double dose of Ativan only just took the edge off the nervousness.  So while I was upset to be hospitalized, I was also glad to know what was going on.  Pneumonia isn't anything to laugh at and can be quite serious.  However, once admitted, I was quickly hooked up and being pumped full of antibiotics so I knew in a few days, barring any complications, I’d be much better.  I even tried Wednesday afternoon to convince my doctor to let me go home the next day. 

I had no idea the next day would be one of the scariest of my life.

 
 

(Look at me being all cliffhangery and whatnot)