Sunday, February 28, 2010

The Stillness Between Two Waves

Oh my gosh I'm here typing with one hand from my hospital bed -- me, not Ethan.  Whew.  I really want to give you the whole blow-by-blow of this whole (did I accidently call it some sort of adventure?! Dummy Cathy! Naive!), but I'm still having a bit of a time focusing and proofreading, so we'll see how far I get tonight.  On last Monday it all seemed fine and goofy, about 7 of us ladies getting trapped in the main women's bathroom on the first floor of UVA Hospital, with useless maintenance guys on cell phones and Ethan saving the day by jimmying the broken latch with a credit card (That's my husband!) to save the day.  Nearly one week later things are very different for me and I'm trying to find and channel my original peace and strength in dealing with this.  I actually thought recovery would be easy! Vacation, sloth, easy I see that the body cannot be directed in that way or even be predictable anymore.  I guess I didn't learn much at Target afterall!

I had hoped to be amblin' around Thursday, home by tonight...but I'm still tethered to the hospital for one or two nights.  There have been many tears but also many visitors, which has helped to bring humor and happiness to the situation.  And thank God for nurses, my lifeline to humanity in those dark and early hours. 

The bottom line is that the actually surgery was the easy part, though my friend Leah took a picture of my head and I could not believe how big my scar is! I really just needed fetynal (sp) once and I've had Tylnol ever since.  Take that skull! I get the staples out next week (ewww) and hopefully can wash these natty dreads out of my hair.  I'm definitely feeling a bit ripe.  There's a small clipped spot in my hair but I look the same.

The problem right now is no use of my left hand.  I can lift my shoulder, use my tricep, bicep, left leg, can walk, etc...but I can't squeeze or grip my fingers...and my arm is kind of like dead weight right now.  NOW -- I can handle this, once the swelling ceases and I get a little physical therapy, it should come back in 3 weeks.  BUT, I am now experiencing seizures in my left hand.  The first one was my whole arm and neck, maybe on Wednesday and the docs just kind of watch and time you while you helplessly thrash about with wide eyes.  I immediately got an injection of Ativan (a favorite) and then put on a hefty dose of Dilantin, in addition to my Keppra (both antiseizure meds).  These meds have localized the seizures to my hand, but it keps happening.  Sometimes my hand bounces around for 4 minutes, other times 30 seconds.  Either way, I feel as if I've stuck my hand in a socket and I feel embarrassed in front of my visitors.  It won't stop yet, and now I'm stuck here until they try to figure out my medication levels.  The Dilantin should be high enough to hold these things off -- but everyone's different.  It's such a bummer! I did not antipate the seizure problem but Dr. Shaffrey did say my brain is a bit irritated at me rght now.  I'll have to come back to UVA to meet with the Epilepsy doc pretty regularly.  I'm troubled by this obviously. 

I have so much more to post, mostly amazing moments, lots of pictures of people who have helped me through this, thanks to visitors and some funny moments...but I'll get to that in good time.  Once I'm home, our door is open to whoever wants to visit, have a mini-vacation in our super-exciting Lynchburg, or just hang.  I hope some of you can make the trip, I may be gimpy but we'll treat ya right!

Friday, February 26, 2010

Bad Blogging hubby here.  I think I might get fired after this gig.  here is the scoop folks.  Cathy is unfortunately still in the NICU, but not by her bodies choosing.  The bed that was supposed to open up didn't, so we are hoping by friday she we will be in a regular room and able to have visitors, though all is subject to change.  Speaking of change, Cathy is no longer an airhead, so that is good news.  She does have an accelerated heart rate and has had three small seizures in her left hand, but the doc's are hoping with a bit more tweaking she will get up to speed.  This whole experience has left Cathy pretty whupped, and just when she seems to be slipping into deep sleep, folks come around to poke,prod, and observe.  I guess that is just how things are, and we have no complaints.  Tonight, my wife remarked on my dedication in that I was actually watching Olympic Ice Skating.  Triple Lutz, followed by a Quintuple what-the Mcfrick!  That is all for now. Peace Out.

Wednesday, February 24, 2010

Agent Ethan here reporting.  Cathy is still in the NICU,still bandaged with any number of tubes and surrounded by machines that go bleep, bloop, and PING.  She is in fine spirits and being very well cared for, but there have been a few minor speed bumps which may keep her in the NICU for one more evening.  She had a pretty large seizure which encompassed her entire arm and neck on the left side of her body.  Nothing critical, it just means that now she is super doped up on Dilantin, which is a step above her previous meds.  Also, in Cathy's own words, she is now officially an airhead, literally.  Overnight I guess she developed a little air pocket in her brain, which isn't uncommon.  To combat this they have her huffing pure oxygen, and this will hopefully burst that bubble.  Her left hand is also still quite weak, but this is nothing that can't be remedied with time and physical therapy.  That is all for now, I will be in and out of her room for the duration of the afternoon,  but until she gets moved to a regular room, all visits should be put on hold for the time being.  We love you all, and I will let you know more as time passes.  Peace.

Tuesday, February 23, 2010

Hooray!   Cathy is done, toes a wigglin, chatting, smiling, all the things you want to be doing after major brain surgery.  The tumor was in the doc's words"exceedingly difficult" to remove, but it is gone, kaput, neutralized, and my beautiful wife is back to NICU for observation.  I will let you know more details later this afternoon, but for now, off to see my bandaged babe.  Thanks and praise to all of you for the positive vibes and prayers.
OK Folks, here we go.  This is Ethan, Cathy's publicist, feeling a little like Hunter S. Thompson pounding away feverishly at a keyboard in some foreign hotel room.  As I write this, Cathy is across the street in surgery, being cared for by some of the best people I have encountered in any professional field.  Yesterday's embollisation of the tumor went seamlessly (Well, aside from the sedative wearing off in the middle of the procedure), and last night she was happily chilling in the Neuro-ICU watching Olympic Curling.  Today she should be in the OR for anywhere from three to six hours.  I am going to head back over there and wait with the rest of the citizens.  thanks for all of your wishes of wellness, we love you all! 

Monday, February 22, 2010

The Days are Just Packed

What a day.  More cleaning and getting the house in order, Ethan's mom is here, and we ate a wonderful dinner with my parents and my close friend Michele (known since high school).  What a revelation.  It was just the night I needed.  I was able to eat up until midnight and boy did this gal *PIG OUT*.  Whew! OINK.  I carbo-loaded like a mutha! I won't be able to have anything but clear liquids in the morning and go in at 1pm, so I figured I should just binge a bit.  Full tummy, warm spirits, vanilla ice cream with sliced bananas and a drizzle of chocolate syrup.  Crazy tales from Michele, a photo of a sinister Buick Roadmaster my dad is coveting on eBay...talks with mom about Hubert Humphrey's wife's vegetable soup recipe from an old White House cookbook (NEED that recipe!).  So wonderful.  I want every night to be like this.

I get to meet another childhood friend (LEAH!) tomorrow morning at Hotcakes for black coffee.  I'm such a lucky girl.  I got some kick-ass friends.  I want to really spend time with you when this is over ladies -- you've been there for me.

Here's the cell phone # Ethan will have: 434-426-9374.  He is now my "agent" and will have all access, all the time, to me.  I hope he will be sleeping in my hospital room tomorrow evening after the embolization and then again toward the weekend once I'm out of the ICU.  Please call or text (you've been warned, Ethan does not text very well) if you want to know anything at all.

Sunday, February 21, 2010

Just that kind of night!

Mystery Train: Elvis

Train I Ride

Oh God I think my house may be the cleanest, well organized, cozy little bit of heaven ever right now.  It is nearly 3am and laundry is drying, art prints and pictures framed, new fixtures put up in bathrooms, storage solutions in effect in the kid's playroom...I broke the bank but the fridge is stocked.  Ethan was a real gent and cleaned out all the rotten food from it about an hour ago.  There was a little jug of milk in there from last May and various other fuzzy things.

I just want things nice for my family, my in-laws, and me when I get back.  I already stashed a pint of Chunky Monkey in the freezer.  If I wasn't having other issues I would assume I was pregnant and doing the major nesting thing.  *tweet tweet*

Thanks for all of your comments -- and thanks for reading.  It's been great expressing myself in this way, and it really takes me back to when I kept a journal.  (Though I have read my old journals and they must be burned before Josie can ever read them -- stupid drama! Yilch.)  I appreciate the depth (and humor!) of some of the comments and personal messages.  I mean, this is intense! I can only be better for it and if I can draw on all this love and loveliness, maybe I can make myself a better person.  I hope this feeling stays with me after all I recover, otherwise (as my pal T.S. Eliot would say): I "had the experience but missed the meaning" or something like that.  I will probably take his "Four Quartets" with me into the hospital, along with "Just Kids" by Patti Smith.  I assume I'll be able to read and I'll assume I'll get bored! One can hope, right? I just want to be normal!

And yes, tonight I did tell Ethan: "I don't want to do this.  I really don't."  I believe it came out as a sort of whine, but more dreadful.  I mean, really, this sucks!

Okay, I'm over it.  Love you all!   

Saturday, February 20, 2010

Into the Void

I learned something very important today.  Most of the time, while shopping amongst the aisles of one of my most favorite spots *Target* you usually worry about keeping an eye on your children.  Today was different.  I had gone to class, the girls were in school, and I went to get a myriad of things to prepare for the upcoming week.  Stuff for the house: kitty litter, 24 rolls of t.p., Method Tub & Tile Cleaner.  Stuff for the hospital: slippers, robe, duffel bag, new undies.  Essential kid stuff: ponytail holders for pigtails, string cheeses for snacking, a storage container for the hell of it.  Had my list, plugging along, and then everything just kind of came apart.   Yellow wallpaper anyone?

I left my basket to go look at curtain rods, got distracted talking to a nice older lady about "sheers", and then had about 20 minutes of trying to decide if I should use a regular curtain to disguise our messy pantry filled with old recycling, or use a shower curtain to do it.  I decided and then went to find my basket.  (Cue the Tatooine music from Star Wars...remember, when C3-PO & R2-D2 are in the desert with the sun BEATING down on them.)

After about 25 minutes of LOOKING for my basket, I began to feel somewhat bad.  A very worried kind of bad.  I had walked around the towels & pillows, kitchen wares, food aisles.  Around in circles, I mean, customers were looking at me passing them again and again.  Everyone was busy, talking on phones, and I just kept passing by, dazed.  I thought: Did I just forget where it was? I DID fill it up, right? I think I may have to ask someone to help, mentally help me.  I was saying all of these horrible things to myself (yes, the F-word again and again (quietly)).  I couldn't help dwelling on my condition -- was I under the influence of the tumor? Disoriented or just feeling sorry for myself? Was I completely confused in a public place? Did I just need to leave and try to find my way home? Am I conscious? Am I about to faint? Ethan?

I finally picked a Target employee to approach, in tears.  I said "Can I ask you a favor? I need your help."  She was worried, but I reassured her I was okay, just upset.  I continued: "You don't need to know the story of my life, but I am having a few health issues, and I was shopping and I have been looking for my basket for about 45 minutes and I can't find it anywhere, and I am just really confused and not sure what is going on...I am preparing to go into the hospital next week and I thought I was handling it but maybe I am not".


"Yes I did! Thank God! Do you have it?"

"OH, we found that basket over in *Blue World* and I took it to Guest Services.  They may be putting all that stuff back, they already did the refrigerated stuff but you can just go back and grab all that stuff you had some lunch meat and string cheeses some coffee but I may need to check on your slippers and 2 pairs of socks and that pack of underwear I'm pretty sure the litter and the scoop and the cat food is still in it I'll go grab your basket and bring it to you where will you be?"

"Uh, near the shower cleaners."

"OK, I'll bring it to you!"

This truly had been one of the worst moments of my life.  I had already been in there for about 90 minutes and now I had to retrace my steps to replace stuff taken out and already put back by Guest Services.  It was like being stuck in my own fresh hell...Yeats repeating in my sore head:

 Turning and turning in the widening gyre/The falcon cannot hear the falconer

(Okay I am exaggerating...)
I honestly did not leave my basket for that long -- in freakin' *Blue World* -- whatever the heck that means (bath stuff).  SO, don't forget this pathetic, sorry tale the next time you take your hands off of the handle of your basket.  A bored employee may think it has been abandoned...and take it into the void known as Guest Services which should be named something crueler.  Something like: "Guest Services: First you think you're going completely insane but it's really just a brain tumor! HA HA!!"

I did thank her.  That's really all I could get out.  I wanted to ask if they take baskets arbitrarily or if they time how long the baskets look abandoned, or if they just do it to be mean.  I had approached her at the edge of all my reason and sanity, a humiliating experience really.  But now it was fixed, the wheel jerked a minute, and the world kept turning.  There was normalcy in the relief.

Life won't stop!

Friday, February 19, 2010

Little Diddy

From Braided Creek: A Conversation in Poetry by Jim Harrison & Ted Kooser
These two traded short poems back and forth for years.  Thanks to my mom for sending this to me in Montana some years ago.

Let go of the mind, the thousand blue
story fragments we tell ourselves
each day to keep the world underfoot

Thursday, February 18, 2010

*Q&A* with Russ!

This is dedicated to my brother-in-law Russ, whose questions about these things (the embolization) made me laugh out loud.  I wanted to post his exact words, but I'll just keep them to myself & Ethan.

Why go through the femoral artery to get to my brain? Well, not only does it curve quite nicely through the body, it can also be rendered pulse-less.  It is strong and wide enough to catheterize and used for all sorts of stent-related things.  Here's Wiki for the technical stuff, I assume it's somewhat accurate:

My procedure for Monday is partway down on the Embolism link.

So, next question is, if the tumor is not growing out of the brain, where in the world is it coming from? Well, my meninges of course!

And then the most broad definition of this kind of tumor:

Read about the arachnoid layers! We do have cobwebs in our head.

And, since my tumor is too big for the Gamma Knife, Russ asks how big the incision will be to get it out, since the tumor is the size of an egg.  First, the Gamma Knife is for tumors smaller than 4 cms and that is what it is most effective on.  It pinpoints and zaps with precise radiation.  The doctor has told me they will use the stealth MRI sensors on my head and have these "pens" to mark exactly where they will do the incision, and like I wrote earlier, it may be an opening in the shape of a "U" or a question mark.  There will be a drill involved (ewwww) and something related to, uh...puzzle pieces.  Now I'm not feeling so well...I should wrap this up.  They will lift it out and put me back together again.

Lastly, what sort of physical therapy may I need?  Maybe some.  I may not have any strength on my left side but it is too soon to know if I would need a cane or physical therapy.  I would hope it would be something temporary, but I will think about that more this time next week!

Right Sided Stealth Guided

Boy did I give some of my readers some wrong information in my first installment.  In all the emotional intensity/discovery of what is happening to me I learned that my tumor is on the RIGHT side of my head, not the LEFT.  (Duh!) That is why DOCTORS read MRIs and not patients.  The way I looked at the scan was from a completely different perspective.  I saw it as looking at the back of my head, but it was the front.   (I told the P.A. -- "oh no, now I need to correct my blog" and he laughed and suggested I have a medical editor).  So, now it all makes more sense -- the mass is pushing in on my right hemisphere and had finally "crossed the line" so to speak into coming into contact with my "motor strip" in the middle, and squeezing my left hemisphere.   This has caused the seizure activity on the left side of my face.  Now I wonder if it was the cause of those years of migraines, where upon recovery, I seriously felt brain damaged.  (Though I think most migraine sufferers feel this & don't have tumors.)

I went to UVA yesterday to the Neurosurgery clinic & met with a wonderful team of people all ready to take care of me.  Dr. Mark Shaffrey, who had known Ethan's dad, was everything I had hoped a neurosurgeon could be: up front, brilliant, dressed in scrubs with gray hair and bright blue eyes, very confident.  All he really had to say to make me feel good was: "this is what we do".  That's enough for me! The tumor is 6 cm.  I'm not urging you to go grab a ruler and see exactly what this means, but let's just say I wasn't exactly prepared to see it on the MRI again yesterday.  I may ask for a picture of it, but I had to catch my breath when I saw it again.  (There's just no denying it -- it's so big and WHAT is it DOING it there?!) The good news is, it is not causing my brain to swell at all.

Dr. Shaffrey and his P.A. in Neurology, Gavin MacCleery, explained what they will be doing during surgery.  I will not have my head shaved and I will NOT be awake. (Whew!) Since it is not a tumor growing within my brain or out of it, they won't have to worry about super-delicate brain surgery. They explained some technically squeamish things I will not gross you out with, but let's just say, I will have titanium in my head after this, but it's not magnetic so I will not be setting off alarms everywhere I go (sigh of relief).  I will probably just have a U-shaped scar.  There are risks of course, stroke, my heart stopping during surgery, but Gavin also pointed out your heart can stop while you're just walking down the street.  (Good point.)

Monday at 2pm I will undergo the first part of all of this, where they will do an embolization of the tumor.  *Not for the squeamish*: They will insert a catheter into my femoral artery (thigh) and effectively "steer" a tiny tube up through my body until the reach the tumor.  They will inject some sort of "cement" like material which will begin to cut off the blood supply to the tumor.  I will be asleep for this and stay overnight in the hospital.  By surgery on Tuesday (which will probably take 6 hours) it will be (in my own words) "neutralized".  This procedure is meant to control blood loss when it comes out.   A complication could be it is in there very snug, but hopefully the embolization will prevent major bleeding.  (This does gross me out, believe me.) My brain will recover from where the tumor was and just kind of stretch out and relax after all these years of pressure being exerted on it.   (Ahhhhh...maybe no more migraines, depression, anxiety...but I won't count on it just yet).  I kind of want to see this tumor but I don't think I will ask.  It may really cause me some psychological trauma.

So Tuesday is the day.  I will have sensors on my head from a "stealth MRI" so they can know exactly where to get to it, so I will have a few shaved spots on my head, but it is fascinating -- this technology.

My P.A. gave me what I call a "bunch of fifty-cent" words for this procedure so I could embellish my blog a bit, so here goes:


It's nearly poetic.

I will be at UVA for probably 5-7 days.  My first 2 nights are in the ICU and then they will check me out for weakness on the left side of my body and make sure I can get around.  I was not prepared for Dr. Shaffrey's (wonderfully awesome) nurse, Kathy Oliverio, to tell me I would need at least 2 months recovery time (taking it easy, not lifting stuff like laundry, etc...).  So, I am worried about the prospect of school and if I will need to take an incomplete.  I know school is not my top priority right now, but I'm just thinking about the future to distract myself.  It helps to do mundane things like, get the house in order, and not look at the big picture some days! It's so weird because I just found out about the tumor a week ago and by next week it will hopefully be completely gone.

I hope you all find this somewhat fascinating, because I surely do.  I am scared.  I was up early this morning just thinking about it, still not believing it, maybe being in denial.  We have to arrange at some point to explain some things to the girls, but my folks are close and Ethan's folks are flying down too.  We'll get to all of that.

Witness -- Denise Levertov

Sometimes the mountain
is hidden from me in veils
of cloud, sometimes
I am hidden from the mountain
in veils of inattention, apathy, fatigue,
when I forget or refuse to go
down to the shore or a few yards
up the road, on a clear day,
to reconfirm
that witnessing presence.

Wednesday, February 17, 2010

Late Fragment -- Raymond Carver

And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.

Tuesday, February 16, 2010

Know any good zombies? I have a donation.

Hi to all of my friends and family.  I love you so much, even the Facebookers I barely know.  This has the potential to be the shortest blog ever if all goes well for me in the next week or two.  I just needed to let people know.  I have been diagnosed with a brain tumor (I know, I've heard Arnold's voice in my head over and over since last Thursday: "It's NAHT a TOOMER"), but guess what -- it is!

The first question I have gotten from the few loved ones or co-workers I have talked to personally about this has been "How did you find this out?".  I'll start at the beginning just so anyone else out there who may have something similar happen will know to get checked out.

On January 19th I was out at the Timberlake Kroger talking to a co-worker of mine, Chad.  I had been having some twitches around my left eye and thought it was probably allergies.  While I was talking to him this sensation started on the left side of my face and traveled out to my eye, shutting it, pulling up on my cheek muscles, lips, tensing my neck.  I think Chad just thought the sun was in my eyes, but I thought I was having a stroke.  After about 45 seconds my face relaxed and I felt a bit out of it, but went shopping.  5 days later it happened again while I was getting scones out of the oven.  I ran to the bathroom and looked and it was just NOT right.  A serious spasm.  I went to one of those walk-in clinics that afternoon.  

The P.A. did reflex tests, which were normal, but because of the spasms and history of Multiple Sclerosis in my family (though never proven hereditary, my mom has it and my aunt died from it), she referred me to a neurologist.  I saw him a few days later, Dr. William Wallace, who also said my reflex tests were normal, and talked to me about headaches.  He diagnosed me with hemi-facial spasms, which are usually caused by a blood vessel pressing on a cranial facial nerve (usually you need surgery for this too).  He also ordered an MRI to allay my fears of MS and to see if perhaps a tumor could be pressing on some part of my brain.

Got the MRI this past Thursday.  Why did I think MRI's were silent? From television? I don't know.  What a strange sci-fi experience, some of the sounds were a bit akin to industrial music, which I like, so it wasn't TOO bad overall.  I was scheduled to see Dr. Wallace to talk about the MRI on Feb. 22, but the nurse said he wanted to talk to us in person and immediately.  UGH.

Walked into Dr. Wallace's office and there was my MRI scan on his computer.  He told me because of my lack of major symptoms, he fully expected me to have a normal MRI.  The good news, no MS! Also, no little cancerous tumors everywhere! BUT, as he showed me the scan -- there it was -- a huge mass on top of my left (need to correct) -- RIGHT hemisphere.  WOW.  Hello meningioma.  A tumor 5-6cm around which he said could possibly have been growing for 20 years! Can you even imagine this? Comparing sides of my brain, my left hemisphere is so squished right now, I was so sad looking at it -- my poor brain! 

The tumor seems self-contained, the doc could not see that it was invading my brain or growing into it at all, which hopefully means it is benign.  I got an EEG yesterday (it seems now my hemi-facial spasms are actually focal seizures) and a CAT scan which will show more detail about what this thing is made of.  I was set to see a local neurosurgeon today but she is NOT board certified yet, so I actually canceled that appointment.

My father-in-law worked for UVA Hospital for 10 years in the Cardiology dept and has spoken with numerous colleagues from Neurosurgery.  He has set me up with Dr. Mark Shaffrey, who has, in effect, taken over.  I see him tomorrow afternoon with a chance of having surgery by next Tuesday! They are re-arranging their schedule to fit me in -- I said "You are doing this for me?" to which his nurse replied: "Well, it's big, it needs to come out now."  I will know more by tomorrow afternoon about what will happen to me.  I have more thoughts on this but I will write more after lunch and another cup of coffee.