“How Are You?” “Not That Great! And Great! And In Pain! and Also Sometimes Not!”

I don’t know if I’m the only Cancerful person who is driven (slightly closer) to the edge of madness by this well-meaning question: “How are you?” And its equally well-meaning normally-rhetorical cousins “How are you feeling?” / “doing?” / “holding up?“, etc.

The problem is twofold:

1) I get the sense when people ask me these questions that (because of my Cancerful circumstances) they would actually like an answer.  They really do want to know how I am doing.

2) I feel obliged to answer, and to answer honestly.  Because if I just smile and say “fine!” or even “OK!”, I’m lying.  And I don’t like to lie.  Especially to people who care about me.
But see, the real answers to these questions are REALLY complicated.  It’s A LOT harder for me to answer how I’m doing than it is for you to ask.
Because…
I’m good I’m bad I’m happy I’m angry I’m shitty I’m wonderful I’m alive and extremely grateful for that but I’m also scared and frustrated sometimes and my head really hurt 10 minutes ago but I would not dare complain right now because there are people who… wait, I thought we were going to have lunch?  I’m hungry.  Can I please not be honest with you right now?  Can you take that question back?
You see my dilemma.  This happens to me at least a half dozen times a day.  Via mouth, email, text, skywriter, you name it.  Just this morning I awoke to two (2) “how are you feeling” emails.  And that’s before I even got out of bed.  I still have to answer them.  (I’m still in bed.)
Yes, it is wonderful and lucky to have friends and to be cared about.  But I am not going to respond to those two emails with an efficient “fine!”, or anything like it.  I’m a pain in the ass like that.
And I can’t even begin to be honest with those two people right now.  I have to pee!  I have to eat breakfast!  I have to remove this IV antibiotic drip from my arm!  I have to get out of bed to do all of those things!  Shit, when am I gonna be able to tell those people how I’m doing…
I remember a few years ago some European friends discussing how silly it is that Americans are always asking each other how they are when they don’t really care or expect an answer.  I agree with them now.  We seem to be the only culture that does this as a regular informal greeting, and it really is kind of odd.  Especially considering the fact that we almost never give a real answer to a “How are you?”  So why do we ask it?
The difference is, in my case, people usually actually want to know.  It’s how they show me they care.  And I appreciate that.  I just don’t know how to technically handle the problem of answering the same very complex question over and over every single day.
In fact, solving this very problem was one of the main reasons I started writing this blog.  It sort of works.  I need to update it more promptly when something happens, so people already know before they ask me.
For example, I need to update it right now on what happened to me last week.
Which was that I ended up in a hospital on a leafy hill in northern New Jersey with an infection in my brain.
So if you happened to ask me “WHAT’S GOING ON?” AND “HOW ARE YOU DOING?” right now, here is how I would answer.  (NOTE: This information is only valid for a maximum of 15 minutes.  Things change fast with a BrainChance.  This is also part of my problem.)
So…
Q: “HEY CHAD, WHAT’S GOING ON?”:
A: Well, I’m sitting outside on my parents’ porch (I got out of bed) and I am typing this blog post while I wait for a nurse to come here and draw my blood and help with me with the intravenous line of antibiotics that I have had hooked up to my arm for over a week now.  I’m getting a little specific, but that’s what’s going on.   But why don’t I start from a little further back…
So last weekend (last last Saturday, to be precise – 10 days ago) I had just arrived at my sister’s house in NJ after traveling from the West Coast.  My head at that point was relatively stable; wasn’t hurting too much, hadn’t leaked in a good 5 days.  I was on the mend.  And then, after I went to bed, I suddenly got nauseous.  And I threw up.  And that threw open the Gates of BrainHades.
Which is to say, something clicked when I barfed that started my head hurting AND leaking again.  This had happened before, from the internal barf-pressure, (IBP).  In fact, IBP is what started this whole leaking thing in the first place.
So that wasn’t good.  But what was even worse is that it appears I already had some kind of infection going on in my head.   And all the leaking got the infection (which was probably isolated to the skin around my suture) suddenly spreading into places where it could cause some real trouble.  Like inside my brain.
So I suddenly got a bad fever.  And then I passed out.  And I may have had a seizure.  I definitely peed myself.  Whatever happened, I also became completely unresponsive, so my family called an ambulance to get me to a hospital.
And that’s where I wound up staying for an entire week.
WHAT HAPPENED AT THE HOSPITAL:
– An MRI showed a bunch of nothing really, which confirmed my post-surgery MRI that said everything with the surgery went well.  So that was a good thing.  As far as cancer, things are looking alright.
– A battery of brain tests showed that things were under control fever-and-seizure-wise, which was great.
Here is a picture of all the diodes they had hooked up to my head.  For a week.  This was a major pain in the ass.
IMG_1910
 – A couple of tests showed that I definitely had some kind of infection of the CSF (cerebral spinal fluid); that clear liquid that surrounds my brain, that has been leaking and causing trouble.  This infection gave me the high fever and made me forget the entire 48 hours surrounding my admission to the hospital.
– To combat this infection, they started me on a high dose of 2 different IV antibiotics.  Which I’m not that psyched about, but this is what I have to do to clean up my brain, so I’m doing it.
“SO HOW ARE YOU FEELING?”
In general this has all been a pretty serious ordeal, and I’m pretty sick of spending my time and energy “recovering.”
I’d much rather be spending my time and energy “doing things.”
I’ve got a headache that comes and goes: some of it lingering from the original Uncommon Cold headache, and some of it caused by the leaking / swelling of my head.  I have to be careful to sit and sleep pretty much upright, to keep fluid from building up, and to make it easier for it to drain down inside my body.
Luckily they were able to check me out of the hospital on Saturday night.
So now, I’m just staying at my parents’ house, administering the IV antibiotics to myself.  Which isn’t very hard, it just takes a long time to do, and I have to do it 3 times a day.  So it’s kind of my main job at the moment.  It’s supposed to continue for another couple of weeks.  It’s even more of a pain in the ass than people asking me how I’m doing.
It’s 2:55PM:  and a guy just arrived to draw my blood and replace some of my IV equipment, so I’m going to pause writing this post…
8:09PM:  Wow, the last 5 hours were pretty eventful.  And not necessarily in a good way. In the spirit of “What’s going on?” here’s what happened:
– Guy came, drew my blood.  That was all fine.
– He also took my temperature, which was slightly feverish, out of nowhere.
– Just after he left, this feverish temperature suddenly made me feel like I was going to barf.  (It also could have been all the sparkling water I had just chugged.)  Either way, barfing means IBP.  Which means leaking CSF (cerebral spinal fluid).
– I barfed.  Not much, but enough to get the CSF running again.  Luckily, it didn’t leak OUTSIDE my head, it just started to build up in a lump under my temple.  This is an improvement, but it also causes a killer headache.  So now I’ve got that going for me.
– In addition to the headache, my temperature reached 100, which suddenly caused some serious cold sweats.  But then my fever broke, and disappeared.
– Right now, temperature now seems to be getting back to normal!  And I’m feeling… well… could be worse!
So that last whole thing was what happened to me while I was ostensibly in the middle of explaining to you what was happening to me.  And that’s not even getting into how I feel about all of this.
Wait, now I get it.

“Hey Chad, how are you feeling?”

Fine!

13 thoughts on ““How Are You?” “Not That Great! And Great! And In Pain! and Also Sometimes Not!”

  1. I send you healing thoughts and hopes for ninja white cells and an ache-less head. I’m glad your recent MRI showed that all is relatively quiet on the cerebral front, and hope the next weeks of IV hell are better than you fear, and that you get to do things you want to do very soon.
    With much love from Santa Cruz

  2. Hey Chad, what hospital in NJ did you end up going to? I had my emergency surgery here. Let me know if you need some fellow cancerful BT buddy to hang out with. I could visit you while you are in Jersey 😉 Best, Bee

  3. Asking how you were was on my to do list today! Happy to be such a procrastinator. I hope this cold virus in your head works fast!
    Always sending you good wishes

  4. Thanks for the update Chad. So sorry you have been having a rough time, (to say the least). I think of you often and pray for strength, courage and healing for you. I wish I had some inspirational saying that would make you feel better…. It all has to be getting terribly old for you… Keep fighting!

  5. Hi Chad, WOW!!!! Powerful stuff!! For some reason saying “I enjoy your blog” doesn’t seem quite right but your writing is very inspirational. You are a brave soul!! If you hear a horn honking outside your Dad’s house that’s me riding by saying Hello.

  6. been fighting this GBM since 2012 and you have inspired me so often. sad to hear how this trial you bravely signed on for is a royal PAIN in the BrainPIB. praying that it pays off immensely for YOu and GBMers like me. Glad you’re w family hope Dutch is by your side too always thinking about you Thks for the update fight on many beautiful moments ahead for you. and I BELIEVE there is life after GBM! Thanks immensely for your activism on behalf of of those of us that have been dealt the brain cancer card

    Leslie

    >

  7. Hey Chad Thanks for telling us “how you’re doin” so I don’t have to ask. When someone asks Irwin that question he replies “I’m doing!” Sorry you’re having such a difficult time. This brain cancer is pure unadulterated SHIT! You have things to do places to go and people to see. We send you our loving thoughts and prayers Can’t wait for you to return to LA We miss you.
    Lots of love
    Lynn and Irwin

  8. So I’m thinking some kind of colored flag system outside your house could alert the pesky neighbors who keep coming by. Purple being spectacular to orange being awful, in spectral order, of course. I’ll be watching 🙂

  9. Pingback: An Uncommon Two Months | the BrainChancery

Say anything! This cancerful brain would love to hear from you...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s