Tuesday, March 30, 2010

Trippin' Ya'll

I seriously got worked during my Occupational Therapy (OT) & Physical Therapy (PT) appointment today.  I just didn't realize the aches and pains it would cause.  These folks don't mess around! I had to go on some high-blood pressure meds last week because it was getting so high I wasn't allowed to finish the PT or had to skip it all together.  At one point today I was supposed to hold a 4 lb. ball and do abdominal crunches, coming up & placing the ball between my knees.  Are you kidding? My belly has not done anything like this since the Physical Fitness Test in high school.  I could not hold the ball with my left hand anyway, so it waits for me another time.   I'm all belly, there are no ab muscles in there.  Especially since I gained more weight & was in a bad position for 9 hours in the car yesterday, I can barely take a deep breath.  Bad posture big time.  I actually weigh the same as before, it's just lost muscle in legs has turned itself into my belly.  Ugh.

I just went on a "mini-vacation" courtesy of Ethan's parents (Mar. 25-29).  It was planned last fall when I was normal.  After everything that happened these past few months, the trip was still on -- though I kind of wondered how in the world I would make it.  I was so worried I wouldn't make it back.  I mean, like my head would swell or I'd have the seizure to end all seizures & be far away from a hospital.  We were on Fripp Island in S. Carolina, which is both residential living and a resort.  It 's nearly 20 minutes from Beaufort, which has a vibrant downtown (for tourists) and huge lovely houses.  It also has the Marine Base (chronicled by Pat Conroy in The Great Santini) but I didn't get to see many jets flying around.  They obviously skip flying over the resort areas.

South Carolina is a strange place.  Driving through the mainland reminds me of Iowa, another place I never need to see again (though Iowa City is beautiful, I'll admit) but really all you need to know about Iowa is that this is where the band Slipknot comes from (Des Moines suburbs).


Okay, so it's not a bad song after all these years actually.  Maybe I shouldn't have looked it up.  It's just the mask gimmick.  This is 9 guys in creepy masks.  I could do it for Kiss.  But not for guys from Iowa. 

Obviously I totally lost my way last paragraph.  Back to SC -- Anyway, talk about poverty, black & white.  Do these people have anyone looking out for them? The roads are absolutely horrible, NC & VA are so smooth & clean.  There is trash everywhere until it becomes nicer & then there are signs for various volunteer "adopt a highway programs".  Cheraw is a great little town, so quaint Sherman decided not to torch it.  It's also where Dizzy Gillespie was the only black resident allowed in the local club to "entertain".  Beaufort, Fripp, Hilton Head, these are beautiful areas mostly for the whites, who never have to acknowledge how the rest of the state lives.  (Sorry & not to offend, because these places are gorgeous & there is a lot of ecosystem preservation going on).  I think about Gov. Mark Sanford, who flew down to S. America in a govt plane to visit his mistress.  I especially think about the nicely tanned, just played a round of golf yahoo Joe Wilson, who yelled at Obama "You Lie!".  Okay Mark & Joe, tell me about that 12.8 % unemployment rate & the roads filled with potholes.  Tell me about the several instances that I saw in which state cops had pulled people over on the highway, they were black.  Tell me why people visit plantations? Glory days? Architecture & landscaping may be okay reasons, but like I told Ethan's mom -- these were not nice people.  I guess I can appreciate the tunnels of live oaks with spanish moss, but the houses? The myth of the southern aristocracy? So there's my liberal rant for the day.  Could it be without the tumor I'm even more opinionated and stereotype people more? Then stick that thing back in there! Geez.

So, I'm sorry -- I seem unable to keep my thoughts to myself.  There is something different about my personality -- I am a little less shy, I really enjoy talking to strangers (wha?), I laugh more (honestly), I don't get car sick anymore (for now). 

  Our view from the porch.

It was a good trip overall, besides my various ranting.  Our rental house on Fripp Island was the perfect size and the screened-in porch had a perfect view of a boardwalk over the marsh, filled with egrets, Great Blues, seagulls, tri-colored herons, & various other marsh birds.  At one point Ethan's dad was throwing a net over the boardwalk and a Great Blue Heron landed on the railing and watched, waiting for a handout.  He didn't get a fish but Dennis had a special little chat with the Blue & Josie & Bea quietly walked out on the walkway to see it all happen.  We also had a young buck with little velvet bumps on his head come to the back where the girls gave it some crust.  (I know you shouldn't feed the wildlife, but these critters already seemed tame.)  It was a very calm and relaxing visit for everyone.

 The Great Blue is about 3 inches to the right.

 Our new friend eating crust cut from PBJs.

The highlight for me was eating at the Gullah Grub Restaurant on St. Helena Island.  There was a t.v. inside running a loop of shows & documentary-type stuff and we saw the owner (Bill Green) cooking oysters on the Martha Stewart show, and then Ethan said "do you recognize that voice?" and I said "just tell me" and it was Anthony Bourdain! (His South Carolina episode from season 3.) He was watching Bill making "Frogmore stew" and a she-crab boil or something.   I looked at the t.v. and there was Anthony, sitting in the dining room.  I said to Ethan "It's like we're living out an Anthony Bourdain episode!"  The Gullah waitress, beautiful & funny, & I talked about our love for Anthony.  The sweet potato pie was magical.  Ethan's dad recreated the Frogmore stew later on & it was yummy. I was determined though not to let anyone peel the shrimp for me -- I needed to prove I could do it one handed.

Gullah Grub Restaurant.  First time I ever drank Swamp Water, Arnold Palmer's favorite mix: sweet tea + lemonade, served in a mason jar. I imagine his may be a little spiked.

Tuesday, March 23, 2010

Just thinkin' about stuff...probably need a nap.

Today's NASA image is a bit strange.  Not sure I like the "Martian spring".  So, I was trying to think about what to write.  I've had some unproductive days & today I feel really disappointed in the leaders of my home state of Virginia.  First, they are taking hundreds of millions from public schools, second, they completely got rid of the ban on discriminating (in layman's terms, being harassed daily by your good ol' boy co-workers) against homosexual state employees, and third, wanting to "opt out" of the Health Care Reform Bill.  What happened to my blue state? I hope I don't do anything drastic once I'm better.  I'm so mad at these horrible, closed-minded leaders.  OH -- and fourth, passing a bill honoring Pat Robertson as some sort of legendary citizen or something.  Am I the only one who knows about his Liberian gold mines? Ugh.  I need to be inspired people!

I'm mad.  Or maybe moodiness is a side effect.  I have to say, I'm not sure how this anti-seizure drug Dilantin ever got approved.  It's like poison.  The side effects are nasty and I seem to have all of them.  Even some of the rare ones.  I empathize with anyone who needs it for epilepsy.  It will be lowered in a few days, I can't wait! I can barely type right now because of it, double vision, fatigue.

At the same time I'm thinking of two guys I've known who have gone into the great beyond.  One overdosed on heroin in Seattle on his birthday (9/22/07).  Our family had our going away party (we were leaving Missoula, Montana), that night & a friend from work came over and we joked about him, she said she had called him, or was going to.  We talked about what a dork he was (we both adored him) while looking at pictures of him on her cell.  The next morning when Ethan told me, I immediately cried out "suicide -- he hated his parents -- what day would you pick if you hated them!".  Those close to him thought it was accidental, so I've mellowed.  But if you've ever done heroin before, quit it (for a decade) and move to Seattle of all places, seek it out, how will it end this time? We had gone to Seattle earlier in April (Zoo for the girls, some flash work at Madam Lazonga's Tattoo for me, aquarium for the girls, visiting Kurt Cobain's house for me, so 90s), and I had tried before the trip to contact this friend but he had changed his number.  I could have asked my co-worker, but I didn't.  I didn't try.  Then he died that fall.

And then there's Ernie, who I mentioned in my last post.  I had no idea what was happening, or had been happening to him, which was fighting these rare kinds of brain tumors for the last eight years.  Chemo, radiation, Gamma Knife, being studied...my first thought after reading his March 17, 2010 entry was "I feel like such a jerk, my blog is all "no anxiety, except for that time I lost my basket at Target".  I know, I know, I didn't know Ernie was going through this, but if I did, maybe I would have been writing things less flippantly.

Besides going on many a band trip with Ernie (CHS Marching band), I just had this affection for him, even since middle school.  He was one of my most favorite people, an upperclassman who never snubbed you, always smiling, goofy, never angry.  I don't even remember if it was middle or high school, but kids used to "trade" Swatch watches for a week or two.  There were so many different kinds going around, & I always preferred the men's size.  I think I had the comet one (my first was the clear see-through one but it yellowed!), which had come out for Halley's Comet.  But he had the style of all styles: the Keith Haring one with the dancing figures around the face, red and yellow.  I was really into Andy Warhol for a time so I knew Keith Haring, and I prayed and prayed Ernie would forget I had it.  Nope.  I had to give it back.  Bummer.  I think the only time we had been in touch since his graduation was when I asked (via Facebook) if he still had it & he was like "are kidding? I still troll eBay for other ones but they are so expensive!" (Actually there aren't even many on eBay, (and none like his) I just checked.) I just wish he'd told me about his blog.  But you know, he was either private or didn't want sympathy.  I was almost a stranger.

In December 2009, he got blood work done and was later told he had NO platelets.  The doctor basically told him "quarantine yourself, you can't get a cold".  While trying to find out the cause, he got a biopsy (bone marrow? but my short term memory has become very fuzzy from meds).  On February 24, 2010, the day after my brain surgery, he got the news his sample was malignant, and it was leukemia.  2-6 months to live.  I wish I had gotten in touch sooner of course, but knowing late is better than not knowing at all.  Imagine going to his FB profile, not paying attention to other postings and writing "What's up Ernie? How ya been?" What a jerk I would be, man.

His blog:http://wheresernieshead.blogspot.com/

So there are two stories, equally tragic.  The difference being that one of them really wanted to live, and had been fighting to live for EIGHT years.  The other really did not, and while I still love him (but not his addiction) I am still mad at him.  What a waste...(fill in the blank movie buffs (is this really a word?)). 

Rest easy you two -- never forgotten.

Sunday, March 21, 2010

Crummy Cathy

Okay, so I was warned about this.  Gavin MacCleery (P.A. Neurosurgery) told me I would recover quickly for a time and then...nothing.  I would come to a plateau of sorts where things would slow down.  Yesterday was that day.  It does seem now like the tumor had nothing to do with my headaches, because I did have a migraine for a good part of the day (damn new moon, or is it the equinox?).  I felt so completely crummy, muscle aches from physical therapy, my head, so exhausted, stressed I could not do school work in preparation for a test today.  I got out of bed for a few spoonfuls of oatmeal, up again for Facebook and to eat some crackers (sorry I missed your call Caroline!), and one more time for an Excel project (complete failure, those formulas!) and a rice and cheese burrito.  I slept nearly all day, and then I slept all night (except for the daily 6am Keppra dose).  I didn't even hear the girls chatter when they got up at 7:30am.  I can't say I'm "rejuvenated", but I'm up, no headache, no heartburn yet from the coffee (side effect from a med), the wrens are singin' away (so loud for such a little bird), Ethan's about to make eggs, folks come for a visit tomorrow, so, things are good right now.  Except for this darn Excel test I should have postponed a bit longer!

Still thinking about one of my most favorite people from middle & high school, Ernie Deomampo Jr., who died 2 days ago from leukemia (he had battled problems with brain tumors for years).  I am going to write a little more about him and give a link to his blog.  I didn't even know he was sick until the day before he died.  I would not have known at all except he popped up on the Facebook sidebar that said "reconnect with" and for once, I did it.  It was too late to actually reconnect, though I left a few comments I hope his family can read.  I don't know, I started to read his blog from the beginning and I just wish I had known he had one!  I would have been reading it for years (though I know he was very private about some things in his life).  I imagine his blog was really just for close friends. 

Thursday, March 18, 2010

Ron & John, Motorcycle Men

You guys.  I'm so glad you visited me.  Ron & John were part of our whole gang in high school.  We used to hang out in the parking lot after school and even had spray painted our names on the cement parking things.  I wonder how others saw us sometimes, were we the dorky crowd or the friendly ones? The party crowd (doubtful) or the normal ones? Who knows.  I guess, who cares!  There they were, at the foot of my hospital bed, John, lanky with his legs stretched out, Ron, ever the weightlifter/football player, legs open and leaning back.  They have their own bike team now and have been riding together for many years.  Very fast bikes, the crotch rocket kind.  I remember many years ago getting on the back of John's bike to go out to some party in the country (a very lame one if I remember correctly) and asking to get off as we sped down Cherry Ave.  I was terrified and rode in a car out there instead.  I liked to drive fast, but couldn't handle the speed of a motorcycle.

We caught up a little more in my hospital room.  We talked about our 20th high school reunion, which we'd had in October.  I regret not talking to these two and their wives more during it, but it was like a wedding, a little time with each, not a lot with any.  We did agree it was a little weird.  We mentioned specific classmates and gossiped a little.  I talked about my dad's restoration project, this 1965 Lincoln Town Car, and John talked about wanting to maybe find an old Cadillac.  It was a great visit & left me feeling sentimental.  My folks showed up and John immediately went up to my dad and said something about owing him an apology, 20 years late.  I believe my dad may have said something about "I've been looking for you for 20 years" -- this was the reconciliation about egging and toilet papering our house after I had egged his car.  Or was it Chad's? It was bad (& fun) either way.

We all chatted for a bit longer and then they left so I could spend time with my folks (who I'm also grateful for visiting so many times, along with my sister's family.  It's so nice not to be forgotten!

Hey Laura!

I'm sorry to say this but as I thought about this post that song by Christopher Cross was continuously going through my head: "When you think of Laura...Hey Laura...".  Wasn't it "Laura's Theme" from General Hospital, the soundtrack to the whole Luke & Laura saga?  Was Tony Geary really a heart throb?


I apologize Laura, for even bringing all of this up.  You deserve more! I met Laura in the band freshman year in high school.  I played clarinet and she played flute in both the wind ensemble and the marching band (the best ever, always #1, we won everything!).  We also shared a mutual friend Natascha, who also played flute.  There was many a band trip together but not many classes because she was much smarter than I.  I remember she took over as manager of the boys lacrosse team after I had lied to my folks and snuck away on an out of town trip for the team to play Collegiate.  (I was supposed to be at band practice & to this day still don't know how my folks found out.  I clearly remember almost throwing up the day my dad picked me up from work at Mr. Donut and asked "what were you doing the weekend of...?).  Anyway, no more managing for me -- I was devastated (no more Rob!).  I was very envious watching Laura out on the field during games keeping track of stats.  What's funny is so many years later my husband and the previously mentioned Rue worked with this Rob, who, predictably had no idea who I was.  Typical.

Laura came to Lynchburg with the other gals I have mentioned and we took her kids and mine to one of the few places Lynchburg has going for it -- Amazement Square, a kids play place/museum/educational/ 4-story building downtown.  I had not really been in touch that often with her but it was great when she came to visit at the hospital.  She brought with her a gift from Bodo's -- sesame bagels and a tub of Lox spread, which Ethan & I scarfed down as a midnight snack later.  It really hit the spot.  Laura didn't stay long so we really couldn't talk, I think my parents and my sister's family may have been there too.  Luckily she'll be visiting us for lunch in about 2 weeks so we can connect then.

Laura is cool.  She has been through a lot but is so together, classy, brilliant, and as my mom always mentions whenever she sees her: "I just think Laura is so beautiful."  I do too! Thanks Laura, I can't wait to see you in April!

Kim, RN

What a surprise to have Kim walk into the NICU to see me.  She works at UVA Hospital and I had not seen her since her wedding to Reuhl (sp?), an intense former Marine, drummer, and co-worker of Ethan's at a local landscaping company.  Or was it at our wedding? Or that dinner at Northern Exposure? The years run together after a decade.  Kim now brings home the bacon, while Rue is a stay-at-home dad, something I'm not sure he even believes.  She told us some funny stories but couldn't stay since she was working.  I look forward to getting all of kids together for a play date soon.  Thanks Kim, it was so good to see you!

Tuesday, March 16, 2010

Michele, My Belle

My Michele.  Guns 'N' Roses wrote a song about you.  Ooops -- wrong Michelle! (Thank goodness.)  Michele & I didn't do a whole lot together during high school, but when we went off to Tech together we got to be real close.  She was on the tennis team and quite dedicated, I pretty much just smoked and wore my leather jacket, trying to look "different" (sigh).  How she could stand me, I have no idea.  She was the friend who loved music, and we connected and shared that.  I was bleaching my hair and into Metallica (my love for them ends with And Justice For All, I'm a purist, just sayin'), but also The Cure (Disintegration had just come out) and Depeche Mode's Violator (I had loved them since 8th grade).  Oh my gosh, Motley Crue's Dr. Feelgood!  I made her listen to that a lot.  She didn't mind (did you?).  Michele, wow -- she liked RAP and knew all the words! Old Skool style! Public Enemy, Kool Moe Dee, Big Daddy Kane, N.W.A. to name a few.  That band with MC Serch.  I may have wanted to be metal, but she was my idol! We went to see Aerosmith together for the "Pump" tour and all I remember was Sebastian Bach (alright ladies, big sigh, those lips!) of Skid Row being a much more energetic and charismatic front man that Steven Tyler.  Not that it matters.  Eventually she transferred to VCU for the graphic arts program and I felt the loss of her company.  I knew VCU was a much better fit.  Tech ain't artsy folks.

Then, not much of anything.  I knew she got married.  I'm not sure I even knew she had kids.  She disappeared and I was out west.  I had skipped the ten year reunion in 1999 which maybe would have been my chance, but there was no way I was going to that.  Too soon.  I didn't even try to find these people, I think I was intent on leaving high school behind.  And college too.

But the 20 year reunion...I was up for that.  Michele and I finally connected.  I can't remember if it was from the Reunion website, Facebook, or what.  But she was part of this early reunion of Kel, Laura, Michele, & I in Lynchburg.  Michele was still the athlete.  I had seen pictures of her snowboarding, biking in a 100 mile race (what the?), I saw pictures of her adorable sons and knew that she had gotten divorced.  She was very independent, hip, running her own design company -- all while working full time.  Superwoman!

When it came time for the CHS 20th Reunion, I could feel myself chickening out.  Ethan & I also didn't have anything extra to get the tickets with.  We have a rather slim existence in Lynchburg & I was quite embarrassed to tell her we could not get tickets when the time came.  She fixed that by arranging for us to have free admittance.  The organizers had tix set aside for cases just like us.  I was grateful, but now I had to go!  I was anxious! Michele had told me: "You don't understand CAP, I need you to be there."  It had been so long, I guess I wasn't prepared for Michele's dedication to me.  I love this girl!

The 20th Reunion ended up being a lot of fun for Ethan & I, I won't chronicle that here in the blog but Michele looked so beautiful (actually, super hot! Admit it people!) that night & I was so happy to be there as her old friend after so many years.  Out of all the people who contacted me about my diagnosis, she took it the hardest.  I reassured her I was doing okay, but she was really scared for me.  She was the most sentimental out of our peer group from high school.  We arranged for her to come by my parents house the night before I went into the hospital.  We left Lynchburg really late and I was so worried it would be too late for her to drive from Culpeper.  When we got to Ruckersville to my folks, she was already there.  I was so happy, content, and relieved!

We had a great dinner there (sill need those recipes mom!) with Michele and with Ethan's mom, Kathy (who left to stay with a friend), and then Grandma Lois, Grandpa Warren, & Ethan took care of the girls while Michele and I talked for a few hours.  The most important thing she explained to me was about visiting the hospital.  I wasn't sure I wanted anyone to visit.  I didn't know how I'd look, I didn't want to gross anyone out...but Michele set me straight.  She told me : "People who care about you just need reassurance that you are okay.  It has nothing to do with how you look, that has nothing to do with it.  We just want to see you."  That's why I love Michele.

Her and Nicole did visit, and it was a great one.  I remember feeling Michele's calm energy while she sat beside me.  Very still, but solid.  Her and Nicole combined made it whole.

Nicole (we did it like this, we did it like that)

Class of '89 just keeps on rockin' the hospital.  I had not been in touch with either of these gals (Michele came too, but she'll get her own entry because this one turned out so long) while I was in Montana.  Maybe Nicole once because I knew she was an avid scuba diver.  Again, I have to give props to Facebook.  I'll never knock it or complain about it again.  (If all your hundreds of friends vanished, would you even know where they actually live? Have you written down phone numbers or addresses? Do you even know the names of their kids or do you skip all that?)

It's funny how friends can be part of the same "peer" group in high school, but each is completely individual and the things you end up doing with one may be *quite* different than what you do with another.  Nicole was this for me.  I believe she was the first to tap into what tiny spark of rebellion was brewing in my awkward little soul.  I'll also say, peer groups are very malleable, people can come and go, and at this point I believe "our gang" had morphed into three couples.  It made perfect sense Nicole & I would band together.  Nicole was cool.  She went to college parties (for God's sake) up at UVA.  I thought only guys did that in high school.  She had a Pee-Wee Herman doll that talked and knew all the words to The Beastie Boys "Licensed to Ill".  What girl is this brilliant (besides Lex of course)? 

We even wrote a rap/rhyme for Mr. Strong, the English teach, who inspired me to write and who I still think about. **(Last I heard he was teaching in a local womens prison and had even come across some old students there.  Sorry to drift but on one of our family's visits back to VA we ended up sitting next to him outside at The Mudhouse.  I said "Mr. Strong!" He looked at me for a bit, and I had to say "It's Pitts!"  We had a good talk and it turns out his best friend lives in Missoula, MT.  I loved him, he taught me to love poetry and to try writing it.  He was a bit of a live wire though, & didn't make it through my senior year, which was unfortunate because he was the only reason I was even going to school, hence, let the skipping begin!)

One fateful night in Littlejohns Deli, Nicole lit up a cigarette and gave me some tips.  We were using a sodapop top as an ashtray & I'm positive I must have looked like a dork.  I didn't become a smoker until much later, so I don't blame Nicole at all.  It was a choice I made consciously.  BUT, the funny part is, remember how we used to listen to the radio? A day or so later my mom was driving me to school and they were doing the birthday announcements (probably on 3WV).  "Happy Birthday to Cathy Pitts! From the one who taught you how to smoke!" I think I laughed out loud out of shock.  My mom did not laugh.  At all.  Oh man, Nicole!

We may have caused some mischief around town, I was beginning to realize I liked leaving my shy self behind.  The most notorious activity (except for one I better not mention too specifically, having to do with a pumpkin, doughnuts, and Vaseline) I engaged in was hanging out of the sunroof of Nicole's sweet blue Honda Prelude holding a dozen eggs in my hand, firing them off like a machine gunner at our friends Chad & John, going down Emmet St past where JPJ is now.  One of them was trying to roll up his window & I think my last egg barely made it through -- Victory! Granted, this did have some repercussions later that night involving my parents house (eggs & toilet paper, anyone?), which I got mad about because -- it's my parents, get revenge on me! I guess we called it even & I have another story of "reconciliation" 20 years later in my hospital room about that.  Too funny.

When we met up so many years later, I was happy to know her again, she had married, had a daughter, and was very successful.  She really thought I should go back to school, and a few times was like, "Pitts, you back in school yet, what are you doing about that? I've always felt like she was one of my biggest fans.

Of course she was right there when I started to let people know about my tumor.  Checking in and then setting up a visit since she would be driving from northern VA.  (She still checks in every other day.)  Nicole showed up with a wonderful bag of goodies.  Michele was with her (entry forthcoming!).  After she left I opened up a bright red box with a white bow & it was a wine colored scarf with magical hot air balloons on it from Talbot's.  My goodness.  Of course I cried.  She later told me it had reminded her of UP, which I had watched the day after my diagnosis with my family and bawled at its emotion and beauty.  (Bad idea, should have waited until after my surgery for that movie! So weepy I was!)

I can't remember that much of the visit unfortunately, I don't know if I had just gotten a Dilantin injection, or if I was just beat.  Their company did make a difference and I was comforted by the fact they had made the trip into town.  I do remember they teased me about the guy, Dave, doing vitals.  "Of course Cathy would get the guy with the tattoos! Big surprise!"  He was cute, like a young Michael Madsen, but I definitely must have been out of it because I always ask people about their tattoos, the artist who did them, and I missed asking him.  I also remember Nicole's story of scuba diving in the Galapagos.  Hanging on to a huge mass of barnacles, peeking over a little ridge, watching as hundreds of hammerhead sharks appeared out of the darkness.  Nicole's cool like that -- and I love her for it! She has been so dedicated to whatever she's taken on, beginning with paying for college herself, working her way up, scuba diving around the globe, and now being a mother.  She's done things in her life I could only imagine.

Even though Nicole & Michele visited together, I don't want this to be too long for any readers, so I'll give Michele her own entry too.

Monday, March 15, 2010

The Sandridge Clan

For a time, it was like a second "CHS Black Knight Class of 1989 Reunion" at the hospital.  I had known my old friend Kelly was dealing with her dad's recent lung cancer surgery, but I had no idea he was back in the hospital with some complications.  Imagine my surprise when her mom Doris walked in to say "hello" to me in the NICU.  Perpetually sunny, and like a second mom, I had not seen her in person in 20 years probably, well, except for a minute at the Amtrak station restaurant in C-ville when we were visiting from Montana.  (Sorry, with me you get all the details right?)

I had met Kelly in 9th grade but we got close in 10th.  Somehow, around that time we ended up as managers for the boys lacrosse team and would spend afternoons handing out equipment, water bottles, and drooling over the two players we had crushes on (~Rob!~Paul!~*sigh*).  I gotta say, lacrosse players have, and will always have, the best legs. I even got lacrosse sticks on my class ring, something I so regret.  Mainly because the lacrosse team meant so little in the big picture, and I barely even said "hi" to this guy.

We were super close, but like all teenage girl friendships, which can border on obsessive if one of you has no boyfriend and low self-esteem (me!), it had its share of drama.  We went off to Virginia Tech and drifted apart, she got through and graduated on time, I was a metalhead-smoker who flunked out after the first year.

When we finally reconnected, we had a mini-reunion in Lynchburg with 2 other ladies you'll eventually meet, Michele and Laura. It was hysterical because one of the things we talked about the most, which we never knew about each other, was our love of the 80s era UVA basketball team.  Guys are always completely shocked, but we know all the names (Lee Raker, Jeff Lamp, Jimmy Miller, Ralph Sampson, you get the picture).  It was a cute team.

What's important about seeing Kelly is that I had effectively ended the friendship in a rather rude way, and she forgave me for it without hesitation.  She didn't care.  We were friends again after all this time and it was a huge relief.  I had been carrying it with me and it was heavy.  She was over it a long time ago.  She's engaged, loves her job marketing for Goodwill across the region, has a great son and step-son.  I'm so glad she's happy.

So anyway, practically the whole family came to see me.  Kelly, her awesome son Andrew (really, Kelly obviously is a great mom, I love him!), her big brother Bryan, who I used to spend time with after I flunked out of Tech.  He reminded me: "Remember when we used to go running? Around the CHS track?".   I didn't really -- why the heck did we do that, I was a smoker! We saw movies back then and talked about music.  It was great to see Bryan again, he's a steady guy and just how I remember.  He also showed me a cool app on his iPhone (iTouch?) where you can mess with people's faces by swiping the screen.

Kel's mom visited me a few times and what really touched me was when she came down with her husband, Merle.  Here was a man, in the hospital for his own health problems, who actually took the time and effort to come see me.  It was so nice to experience that.  He couldn't stay long but the fact that I got to see him I will always remember.  Doris later made a comment about our shared sense of fashion -- the hospital gown.  So flattering those things are.

B.A. (Bad Attitude) Baracus

Oh, some mornings I do just want to be my old self.  I know I had this change in attitude, and it's still with me, but reality is always present.  Household bills, pervy notes to my daughter from her seatmate on the bus (got that taken care of this morning, thanks Ethan!), the neighbor's landscaper who was supposed to wait a MONTH at least before driving through our yard (it's swampy from the rain) to pick up his refuse, but drove through today, leaving foot deep muddy ruts and may possibly be stuck as I type.  As I mentioned on Facebook, the horrible Billy Corgan article in Rolling Stone.  What happened? He was always a jerk but the music was good, so it didn't matter.  He is so lost right now it was hard to read.  You like to be inspired by people, especially those who create, but what a dud.

I gotta stay strong! This stuff can still bring me down a bit, but the important part is not hanging on to it.  I told Ethan the other night after a disagreement that I would never bring it up again.  (WHAT? I'm the champion of grudges!) But I need to resolve things quickly (as Lt. Gorman would say "smooth and by the numbers") and then just forget it.

I did have a minor breakdown a few nights ago, and cried for a long time.  Sobbed.  It wasn't therapeutic, but it had to happen.  It's all part of facing the past, present, and future.  I try to stay in the present as much as possible, especially with my daughters -- their childhood is really so short -- so when I'm there I'm there.  Nothing matters except what we're doing.  Every once in a while though I'll lose that focus, and that's when I get in trouble.  This morning I said to Ethan "I just want to me normal again, I'm tired of being so slow."  But what I should have been thinking is "I need to do my leg exercises today so I won't be so slow".  Right?  Ugh. Self-help meditations have always been so corny to me.

Last week in C-ville we ran into Dr. DuMont (neuroradiologist miracle worker) who said "You may be a little surprised at how slow your recovery may be".  I need to consider that and do what I can to speed it along instead of just sitting and feeling sorry for myself. 

And just for fun:


Sunday, March 14, 2010

Leslie and Beverly

I worked at the Charlottesville Barnes & Noble from 1997-2000, and then Ethan & I moved out to Missoula, MT for 7 years.  It was one of my favorite places to work, and still is (worked at the MT one and am now at L'burg).  It was at the C-ville store I met Beverly, who managed the receiving department.  She was slight, with black hair, black combat boots, black everything.  I was on the sales floor but eventually weaseled my way back to receiving.  I believe it was an experience with a cruel and possibly senile customer (I had to ask a manager to take over so I could run to the back to cry) that caused me to ask for a change of jobs at the store.  (I just cry at everything don't I? But this woman was mean.) 

Beverly & I shared a love of everything 90s (do I hear groans?).  We brought in cds everyday to help us get into that receiving rhythm and unpack and sort, trying to get to zero box count for our manager Mitch.  The Chemical Brothers, Massive Attack, Rob Zombie, Nirvana, Tool -- you get the idea.  I think the only thing I didn't like was her cassette of the band Sea Hag.  We were still Alternative Nation gals.  Tattooed gals.  I remember sitting with her for hours while this guy Flash(?) tattooed a Celtic band on her arm.  It's funny he was named Flash because he was painfully slow.  Really, we were there, like, 6 hours.  Leslie was her sister who would come into the store and visit.  Leslie was not into all black and I remember her as a gentle spirit, with a thing for Ed Kowalcyzk of the band Live, and she had named a kitten Lakini after one of their songs.  I remember thinking they were complete opposites but they were very close, and very funny.  They were/are extremely close to their family and very sentimental about their dad, who I met and loved as well.

I was barely in touch with Beverly when we were in Montana, and not in touch with Leslie at all.  I saw Beverly once when we flew back with an infant Josie.  I had stopped by the B&N once we moved back to VA in 2007 but kept missing her.  I knew she had helped manage a farm with her boyfriend Chris, and when that ended had gone back to B&N.  I knew that they had bought a piece of land in Madison.  Luckily, Leslie was on Facebook, and I caught up with her in the past year or so and she told Beverly about my health "crisis".  I'm not sure what else to call it.

Still, when they walked into my room at the hospital I couldn't believe it.  I mean, I hadn't been a very good friend to either one through the years.  I actually hadn't seen Beverly in 7 years, and Leslie in 10! Beverly brought me her favorite graphic novel (I could always count on her for the cool stuff) House of Mystery.  We caught up, Leslie told me about her job working with special needs kids (the most perfect job ever for someone like Leslie, she's so friendly and patient), and Beverly and I took no time blabbing about the last few years.  She told me about her Subaru and we commiserated over head gasket problems (there had been a recall, or they would cover the repair, but the time limit was up for Bev's car).  It was awesome seeing those sisters.  It's another example of people just appearing and coming back into your life when you most need them.  (This theme will continue as I talk about more great people.)  I am definitely a better person because of it.    

Saturday, March 13, 2010

Another visitor to meet: Leah!

I met Leah in 7th grade at Buford Middle School. She sat next to me in Mrs. Evans "Language Arts" class.  I don't exactly remember how it came up (except for the fact that it was ALL 12 year old girls talked about), but we shared a love for Duran Duran.  Music, buttons, posters...it was a competition.  Who had what D2 merchandise no one had ever seen before? Who had stuff no one else could get? I remember thinking Leah had won because she went to freakin' Ireland and scored some stuff.  But she brought some back for me as well, which I treasured with all my heart and still have in my parents attic.

Her mom is Irish and I was so fascinated by her accent.  I thought Leah was so lucky to have a connection to a foreign country.  Her dad was part of the JAG School at UVA and I had no experience around anyone from the military (in other words, he scared me).  I guess we had a typical middle school friendship, talking too much in class, disagreements where you'd hang up on each other (what could these fights have been about? I have no idea), sleepovers and movies.  The strongest memory, besides her laugh, was the day in 8th grade homeroom when she said: "Well, Celeste isn't the only one moving this summer."  I cried.  I think some kids stared at me and Leah probably told me to stop crying.  Her and Celeste disappeared and I went off to Charlottesville High School a very shy, buck-toothed girl (braces in 9th grade, thank God).  Luckily I was in the band, so I wasn't completely isolated!

We wrote to each other through high school and some of college.  Her life was way more fun than mine.  I actually told her recently I still have her letters & threatened to show them to her teenage daughter (heh heh).  At some point, we lost touch.  Who knows exactly how that happens, it may have been when she was in the Air Force, in Germany, probably.  She appeared in Charlottesville in the late 90s , divorced and with a sweet curly blonde named Deirdre, who was 4.  I was working at Barnes & Noble, living with Ethan, unmarried, no kids.  It was a strange visit -- she was about to move near Boston (hotel management?).  She was a mom, and I couldn't relate.  I didn't think I even liked kids, Deirdre watched Barney on our tv, which I could barely stomach.  Recently Leah said she was in a bad place during that visit, and we talked about how weird it was.  Different places, different people.  

AHH, but the miracle of Facebook! And then to find Leah in Crozet, VA of all places when we moved back east in 2007.  The funny thing is, I always said we'd get together, but we never did, just did the Facebook comment thing.  How lame! I found all sorts of old friends and then never really even tried to see them.  I just always have had this complex (since a 5th grade drama) about whether or not people really liked me.  Mark Cornick, of all people (some of you know him) was the one who told me I needed to let it go, and I pretty much took his advice. 

So, when this whole tumor thing happened, Leah was right there.  I was so comforted by her, and I wanted to hear what her story was, after all these years.  She was with me the morning of the embolization, holding my hand during a seizure at Hotcakes.  She told me she had ordered me a plush brain for me to play with in the hospital (ewww, but it's actually kind of adorable).  She waited through the NICU nurses shift change (nearly an hour of the leaving nurses updating the arriving nurses) and saw me, bringing a bunch of gauze for a "turban party".  We never got to that, damn it -- but I had mine on! She brought me an Irish Claddagh, which I've always wanted.  She came with her teenage daughter Deirdre a few times, who is such a bright spirit and has Leah's humor.  They were crackin' me up and it really helped my spirits, so much.  To be apart for so long, and to have someone just show up to take care of you and to make sure you are okay, that's what I've been experiencing through all of this.  I love you Leah!

Friday, March 12, 2010

Rock n' Rollas (and bagels)

I had some great visitors at the hospital.  It's funny because at first I didn't even want my parents to see me, let alone people from high school or places I worked at in Charlottesville.  I'm so glad I lightened up because the hospital is indeed a lonely place.  I told Ethan one day I really needed him to show up at the time he specified instead of later because I wanted someone to walk in my room who I actually knew.  I told him: "you know all I do is watch the clock and when 9am comes and goes I just feel forgotten, except by doctors, residents, interns, and fellows".  But don't get me wrong, Ethan was there for me, ten-fold after that, bringing wonderful coffee from Higher Grounds (our fave place when we met, which had a stand in the hospital -- I hadn't had a Black Love in 10 years!) and spending time sitting with me. Sometimes he would stay past midnight, after watching Olympics or reading some of the Patti Smith book to me.

Some of my first visitors were a blast from the past.  I met Pete and Lex 20 years ago, I can hardly even believe it as I type.  I was lucky enough to score a job at Bodo's Bagels in 1990, after I flunked out of Virginia Tech (uh, the first time).  Bodo's was pretty much where every young person wanted to work.  As a customer, it seemed like its own secret club, the employees were always having fun, and it paid really well for a food service job.  At the time, there was one location, now there are three.  The owner would never franchise it outside of C-ville (quality control), even though he was probably asked daily by businessmen.  It was a smooth running money-making machine and still is (we eat there every time we're in town).  Even when the line is out the door, you get through in less than 5 minutes.

Pete was one of my managers, super friendly, funny, a rock n' roller (bass player) but clearly in command.  I reconnected with him on Facebook a year or two ago and he is still amazingly hip, writing screenplays, going to concerts (every month it seems, I'm so jealous), reviewing movies, talking about music.  I mean, I just don't know anyone else so culturally literate.  I try, but Pete's got it.

Lex was one of my idols.  She had, like 13 hoops in each ear (if I remember correctly) and adored The Beastie Boys.  She knew the words to every song.  She dyed her bangs with Kool-Aid.  She kept a safety pin on her socks so she could pin them together as they went in the washer, which I thought was brilliant.  She loved all animals and had a horse, and kept a Dr. Pepper on her nightstand for when she woke up.  We went to the first Lollapalooza together in 1991 and at some point I passed out (sun poisoning) near the port-a-potties (indeed).  I'm not sure if she did.  Luckily I was able to sit on a chair for Jane's Addiction, red and dehydrated.  I had the worst blisters ever on my shoulders a week later, but -- that was when I saw The Rollins Band perform & have loved Henry Rollins ever since (though not any of his music since The End of Silence).  Lex & I went up to the original 9:30 club in 1992 to see Henry and an unknown band named Tool opened up for him, promoting their EP Opiate.  That changed my life too.  I remember this friendly Hare Krishna named Robin seemed to be a little sweet on Lex, but we lost track of him.  Lex was tough, as soon as Henry jumped on stage she moved right up front (the stage was probably knee-high), feet planted and elbows out.  The girl knew how to defend herself in the pit.  She actually got sweat on by Henry I was so envious! Me, on the other hand, got totally pushed to the back, and about halfway through the show, had to go downstairs and watch it on the closed-circuit television (wimpy, wimpy, wimpy).   I'm still ashamed.  I want to say we also saw Fishbone together at Trax in C-ville.

I did work with Pete again when I went back to Bodo's in 1995 (after actually getting expelled from Tech) and met Ethan, but I lost Lex until Facebook brought us back together recently.  To finally get to the point of this whole story, I was in the NICU when I saw 2 people outside in the hall.  I didn't know who they were at first & I think I was getting moved to a chair to sit up for a while.  I must have looked ragged.  The guy came closer...PETE! Then the woman...LEX! Oh my God! Lex had a Bodo's bag with my favorite bagel (I keep it a secret but it's a cinnamon-raisin with plain cream cheese and bacon).  I couldn't believe it, that they had gotten in touch with each other and we're actually here in my room.  It was so nice to see them, tell goofy stories about "the old days" and about what we're doing now.  It meant so much to me.  I hope to have another Bodo's reunion some other time when we go back to C-ville.  What awesome people.

Wednesday, March 10, 2010

As my old friend T.S. Eliot would say: "Humility is endless"

I feel like I still have so much to cover from the hospital, but I hope you'll hang in there with me as I kind of go back and forth from past to present.  I really want to talk a bit about some of my visitors while I was in "the big house" as my RN friend Kim calls it, but I'll write about today first.  Ethan's mom left today and we miss her.  It makes us realize that we are just too far away from the northeastern part of the family, but hopefully they'll eventually end up in Carolina part of the year.  I was trying to get dressed and had my pants half on when she whooshed in to kiss me goodbye.  I said: "I was trying to get my pants on for you first!" But she didn't care and gave me a good squeeze.

 I swear, I thought I cried easily before, but ever since surgery, it takes nothing.  I'm always crying, sometimes out of gratefulness, sometimes out of some hospital memory.  I cried when I got flowers on the porch today from "the barn" (Barnes & Noble co-workers) and a short time later when my friend Barb brought over lasagna with garlic bread AND another dinner of meatball subs.  She is amazing! She also brought over her 3 kids plus the 2 she nannies and everyone had a blast (at least until the worst behaved golden, goofy labs from up the hill spotted us and one (Tanner) came bounding over).  I swear those huge dogs get out for 5 minutes 3 times a day and that's it.  Crazy dogs.  The owner is this jerky woman who has no control over them and curses them loud enough so my girls have heard plenty of bad words..  At least the dogs are friendly, right? Or I would have gotten a rifle by now. (Kidding!)

Today was my first occupational/physical therapy appointment.  Our insurance covers 30 visits.  We went over to VA. Baptist and Ethan & I had the same reaction to being back in a hospital.  Dread.  We're so through with this, but I gotta do it.  Upon walking into the therapy room though, I cheered up -- it's like Romper Room (I'm dating myself, & Ron, a big lollipop just for you!).  Or like preschool for adults.  All sorts of colorful mats and therabands, and huge rubber balls in primary colors.  Board games like Connect Four and Operation.  Bells and whistles, wizards behind curtains, and where the schnozberries taste like schnozberries! (for Kimba). 

Ellen was the occupational therapist to give me my evaluation.  Strength tests, eyesight tests, gripping machines, levels of balance, the three levels of pinching doohickey, and then the cruelest test known to man.  The putting pegs in holes box.  With my good hand she said I was at 14 seconds, the fastest she had ever measured (thank you! thank you! go big or go home -- woohoo!).  Now for the gimpy side.  Time seemed to stop.  Or at least slow way down.  No -- time definitely stopped.  I had my left hand on the table trying to pick up a peg...any peg.  I just kept pushing them away from me as I was trying to pick one up.  My concentration was focused, I probably started to sweat.  Just pick one up and put it in the hole Cathy...just one, the rest will come.  I tried for so long, I laughed but inside I was so frustrated! Almost, then, nothing.  Ethan told me later he was thinking "you got it baby, you got it baby -- oh, you don't.  No.  Maybe....not.  Nope."  She eventually had mercy on me but I could not get a single peg in its hole.  Ethan said "this is like that box...I finished his sentence: "from Hellraiser".  I imagined being tested in front of Pinhead and Chatterbox, failing as they laughed, then damned to hell for all eternity.  I told Ellen "get that box away from me!"  Otherwise I did pass most of her tests and she will concentrate on my left arm rehab.

The physical therapist was Maureen, and she will be working on strengthening my legs.  Though I did not know it, my left leg is significantly weaker than my right.  She thinks it is purely from being in bed for so long, not from my surgery.  I actually failed most of her tests.  She had me walk down a hall, fast, then slow, then fast.  Walking while looking up, down, side to side, weaving between green tiles in the floor, stepping over the tiles...noting I dragged my left toe twice (what? how did she catch that?) and stuff like that.  She said I was at a high risk to fall down, but that we'd be working on hips, knees, ankles, all of it.  It was a revelation to hear that my legs were actually more dangerous than my arm, because I assumed the arm was the main problem.

It was a fun place though, I was the youngest patient by about 30 years, but everyone was in good spirits.  I'll be going three times a week and hopefully by the time Ethan goes back to work I can make it up the hill to the girl's bus stop.  Otherwise, I may have to ask Mrs. Sharon (the bus driver) to stop at our sidewalk on the way up the hill for a few more weeks.

Tuesday, March 9, 2010

Big Gold Watch

I'm posting this link because I just found it and could not believe what I read.  Dr. Shaffrey is just a genius, plain and simple.  I was a bit sad to learn I'm just one of about 75 brain tumors he removes a YEAR.  I thought I was special! I'm kidding -- I know mine was a bit larger than usual but a resection none the less (though he did tell Ethan it was "exceedingly difficult" to remove).  I told Dr. Shaffrey how grateful I was, he said "don't worry about it".  Doctors!


Dr. Mohamed Khaled

I swear, EVERY morning at 5 am, Dr. Khaled danced into my room to check on me.  He was always light and cheerful, had wonderful cologne, and was so positive.  Who was this doctor? And then, he was gone.  This morning I was actually awake waiting for him so I could get his picture.  He had just told me I was going home at some point that same day.  I said: Really?!   

Sheeba John, Night RN / Susan Hay IV Team (no pic)

Just a few more pictures before I'm done.  Sheeba was my most magical nurse.  She came in with this lovely British-Indian accent and immediately started calling me "dear".  After a bad night with a younger RN who told me she "Facebooked" all the time (and even showed me her pink Blackberry or whatever) and took 25 minutes to bring me water, Sheeba was the one who left me feeling like someone was actually there for me if I needed to hit the call button (this is very important, especially if you gotta pee).  After giving me an injection of Decadron, which is nearly as painful as the Dilantin going in, she noticed that my newest i.v. was looking very bad, and my arm was getting pink.  She said in her beautiful accent: "Hmmmm, I do not like this at all my dear, not. at. all.  I'm taking this out and putting in a call to the i.v. team.  We will get you fixed up my dear, don't worry."  She knew exactly how the Dilantin felt going in and related to me her own health history, which I should keep private here on the blog.  She did confess she refused the Heparin shots because she hated needles so much (I got 2 shots everyday in the belly to prevent bloodclots, and daily insulin shots in the belly because of the Decadon injections, which basically make you diabetic.  (Blood sugar record one night: 349!) I couldn't believe she was a nurse and refused needles! I guess you just never know.

The i.v. team arrived around 1am, and at that hour, if you can't sleep, company is welcome.  My roommate had left and no one had taken her place.  Susan Hay was a lot different than the i.v. team lady with the huge implants.  She looked a bit like Jackie from "Roseanne" and had intense wide brown eyes.  At first she had no idea how to find a vein, they were so used up.  I mean, it's been 2 weeks and I am still bruised up like a junkie.  She worked on the back of my right arm, slowly tapping it in, and it took some time.  I told her my story and she told me her daughter had recently been diagnosed with bone cancer and it had metastisized.  Her daughter had started chemo but was very scared and maybe taking a little too much Ativan (for nausea) to cope mentally.  I would have been too.  I told her I was sorry, she left, and I cried for a long time.

Monday, March 8, 2010

All I need: Water, laptop, beanie (and maybe some muscle tone!)


I spent 5 nights in the NICU, which wasn't totally planned.  I think they thought three nights because of the embolization, the surgery, and then observing the left-hand seizures and getting the meds right to stop them.  The last 2 nights I was simply there because there were no available beds in the "step-down unit", or, regular ICU.  (All I could hear being stuck in the NICU 2 extra nights were the sounds cha-ching! Cha-ching! CHA-CHING! But I'll get to that later.)  I loved the attention of the NICU compared to the ICU, but I also knew I was taking up a spot someone else probably needed.

When I finally got moved to the ICU, I was sad to see the NICU doors close behind me.  What a great unit and what should I do, send a card to thank them? Get in the way and try to visit? Maybe write a letter to the staff? Let it be?

I got wheeled across the hall to a shared room (it was inevitable), and set up.  My neighbors were Don & Gayl from Front Royal.  He was spending the night with her on a cot in the room and at her beck and call.  She had had three surgeries in 14 months.  The first on her spine, and when she woke up couldn't move her left leg.  During the second, some doctor put a bunch of hardware in her leg but she still needed a cane.  She was ready for some relief and had filled out a special request asking Dr. John Jane (semi-retired, totally famous UVA surgeon) to look at her case.  He had accepted her and done the surgery, taken out all the hardware, and now she could walk unassisted.  They were very friendly and we traded health stories.  She had a laptop and would play Mafia Wars on Facebook.  She was in pain though and always asking for Vicodin, her surgery was far different than mine and she could not lie on her back for 24 hours right after wards.  I was lucky, I mean, 2 nights after my surgery all I needed was Tylenol.  There are no nerves in your skull.

They did have their t.v. on the whole time, but luckily it was Animal Planet or something not too bombastic.  Don was the sweetest and would go back and forth getting whatever she needed -- so dedicated.  They convinced the docs she could leave, maybe a day too early, but she was ready to get the heck out of there, with a hefty script of Vicodin to boot.  I kind of wished I had been in more pain so I could score some narcotics, but it was obvious to the nurses and docs I was fine.  :)  

Rounds at 5 am.

I could not get a great picture of this daily event, mainly because I didn't want anyone to notice my flash go off.  They might think: "is some strange patient taking pictures of themselves in the dark?" or "what's going on in DeSilvey's room?

So, here's the thing about a normal hospital and a teaching/academic hospital: people are always coming to see you at the teaching hospital.  Medical Students, Interns, Residents, Fellows, Doctors, RNs in training, you name it.  There is no rest.  And I tried so hard to be positive and accommodating during these endless visits.  You are the "case" or curiosity, or lesson for the day.  The doctors interact with you and usually 2 or 3 students watch the doctor as he evaluates you.  Sometimes the students get to participate, but mostly they just watch.  I was cheery and kind of wanted to present myself as the "wunder patient", friendly, recovering -- brain tumor? What brain tumor? I'm great!

Early mornings about 5 or 6 sets of legs in green scrubs would gather in the NICU and either Bobby Starke or Nathan Cupka would start with the first case and explain what was going on with every patient in the ward.  I could even hear my name being mentioned and hoped they would come in, but they never did.

Julie Oberle, Occupational Therapist

Julie was as sweet as she looks, and reminded me of my friend (& former mommy group member) Elke back in Missoula.  (Elke now does Mamalode magazine -- find it!) She gave me all sorts of advice and information about how to get my left hand going again.  I won't get to work with her because she's in Charlottesville and I found some rehab here in Lynchburg, but she explained how the therapy thing works.  I'll be getting physical therapy to bring full range of motion back to my left hand but in the meantime the occupational therapy to learn how to communicate with the left hand in a whole new way.  Since my motor strip (where the tumor was pressing) needs time to recover, I will have to get messages to my hand a different way.  I feel good now because I am moving my fingers again, but for days all I did was stare at my hand.  I was "willing" it to move and totally exasperated and worn out, it was like using a Jedi Mind Trick, but not being a Jedi.  All I could think about was war vets.

Beach Babe Crystal

I'm pretty sure this was another nurse named Crystal.  I tried to keep track by the name tags but I was partially out of it too.  All I know is that she had these two gorgeous long brown braids and reminded me of a mix between Judy Garland or some Native American princess.  I'm sure I just stared at her in admiration most of the time.  She had grown up in Florida and when she was 18, moved to Daytona Beach and partied for YEARS.  Finally she said "That's it, I'm done" and entered into the UVA Nursing School.  I was so envious!

Sunday, March 7, 2010

John Bitterman, RN & recovering Hokie


I didn't really want to post this horrible picture of me, but I'm with one of Ethan & I's favorite RNs, John Bitterman.  We traded VA Tech stories (none successful, believe me, Electric Woodshed anyone?) and laughed a lot about those wasted days.  He was married with 3 kiddos so we related about that stuff too.  Gavin MacCleery had taken off my turban and given me a damn beanie to wear, which I could never seem to keep on my head.  At this point, I think John had brought Ethan this "shampoo cap" which is filled with sudsy bubbles and you stick on your head, massage, take off, but it doesn't rinse out -- it stays in -- yuck.  It was a big deal for me to be out of bed and sitting up, and the sling was from the occupational therapist Julie.  I remember when she brought it in to show John and said: "Look what I found!" And I said: "No budget cuts there!" We all laughed.  The sling was mainly a precaution to keep me from dislocating my left shoulder, since I didn't have the strength to really support it.

John helped me out so much.  My left hand was useless and at one point after a Dilantin injection (which burns going in) in my right hand i.v., my right hand became extremely painful.  My vein had broken and the Dilantin was making my hand swell, it hurt so bad.  John immediately took out the i.v. and wrapped my hand in a hot towel.  Relief! He had to put in a call to UVA's "I.V. Team" since he couldn't find a spot to do it himself.  

The I.V. Team are amazing and painless, they can stick an i.v. anywhere in about 30 seconds -- real pros.  This woman appeared in a hot pink top and blazer, looking like Julia Roberts out of Steel Magnolias.  John wanted her to put in 2, but she refused and only did one.  After some chit-chat about kids and life, she grabbed her breasts and said: "And that's when I decided to give myself these as a gift!" It was hysterical and then she was gone.  John was speechless.  

It's hard getting attached to people (John, not the i.v. gal) and then probably never seeing them again. 

Dr. Nathan Cupka

I loved this guy.  He was like Bobby Starke, spending hours and hours in the NICU, on call.  Never seemed tired though, just cheery.  Unlike Bobby, who actually aspired to be a Neurosurgeon under Dr. Mark Shaffrey, Nathan was a Neurologist.  He said he'd never be a good surgeon because "my hands are a little shaky".  After a few spells of having a racing heartbeat, Nathan took it upon himself to figure out that my anti-swelling steroid, decadron, had turned me from hypothyroid to hyperthyroid, and adjusted my daily dose of synthroid, which I've been taking for about 13 years.  Nathan was always smiling, or maybe also it was because I was the easy case in the NICU.  Many stay for weeks and weeks. 

Sheryl Whaley, Nightshift RN/Neuro-Nurse

Sheryl actually went by Sheri, and she was like Linda -- over 20 years in the NICU doing nights.  She loved it, usually doing 3 12-hour shifts a week.  Sheri was like a swan, everything she did was fluid and graceful, and she actually did still teach ballet locally.  I know I look so horrible in this picture, but with Sheri there I felt great.  The funniest thing I remember was late one night she had to draw blood, and like Ames, was worried about finding a good vein.  After a few moments I said "any luck?" and she said "Struck Gold!" holding up this huge syringe of blood.  (Ugh, I know.)  I didn't get to see Sheri much the second night she cared for me because the NICU had SIX admissions from the ER. 

Brittany and Crystal: Neuro-Nurses

What cool women and even better caretakers.  Anything you could possible need or want, they were there.  I did not get to learn much about them, but Brittany was the one who talked to me (being pregnant, having kids) right before surgery while I was waiting to go into the O.R.  I believe the Neuro-Nurses are a special kind of nurse, I mean, you're dealing with brain hemmorages, tumors, aneurysms, and sometimes strokes.  I couldn't do it.

Dr. Bobby Starke and Jeff Reynolds, RN

Okay Ladies, here I introduce Dr. Bobby Starke.  This guy spent 30 HOUR shifts in the NICU, resting on some cot in a back room whenever he had a moment.  He wore New Balance running shoes and his white coat, though a few times he came in dressed in scrubs.  It was Bobby Starke who witnessed my biggest seizure the day after my surgery (I think the day after).  I felt this huge electrical pulse in my left arm and my hand began to jump off of the bed.  It moved up into my neck and was so painful, these shocks and muscles clinching.  He got me a lovely injection of Ativan and then took it upon himself to try to stop the seizures by adding Dilantin injections to the Keppra I had been taking before the surgery (both anti-seizure meds).  He was so friendly and smart...and I mean, even his name: Bobby Starke.  Ethan & I still joke about him.

Beside him is one of the male nurses who took great care of me.  Jeff consoled me after each seizure (there were many more but only in my hand) and talked to me during some times I felt helpless and sad.  Ethan & I really liked this RN -- if someone had told me the male nurses were just as caring as the female ones I would not have believed it.  Though, no commodes or bedpans here, I always asked Jeff to call a female RN for that stuff! Embarrassing!

When I talked to Jeff about the kinds of folks in the NICU, he told me about mostly the aneurysm cases, who I had assumed were older people.  I had confessed to smoking clove cigarettes (have to tell everything before surgery you know) for the past year, about 2 or 3 a day, and he said: "Cathy, the aneurysm cases are usually women 30-50, who smoke."  In fact, someone younger than me had died the day of my surgery because Kendall (who I wish I had a photo of but didn't have the camera) had told me: "I'm closing you glass door so you can't hear all the sadness outside the unit."  It was a mother wailing.

Dr. Khan

"Mrs. DeSilvey, hold your breath.  Now, BREATHE!"
Dr. Khan was the one who did all of the contrast dye injections I described during the embolization procedure last Monday.  He had very intense but calm eyes and I completely trusted him.  I was so happy he posed for a picture because I felt nervous asking him -- he definitely commanded seniority.

Saturday, March 6, 2010

Dr. Gaughan, dude

This guy was like a surfer, chewing gum, laid back, and so funny.  He had been right in the middle of Drs. DuMont and Khan during the embolization procedure.  I couldn't get over how young he seemed, and Ethan actually compared him to Rick Moranis from Ghostbusters (maybe it was just his voice).  The last time I saw him he checked on my angioseal from the femoral artery catheter.  You know, that little plug that ensures you don't bleed to death.  Maybe it was their youth but I can't get over how friendly and sympathetic all the doctors were.  I guess I was expecting little bedside manner.  Actually I was probably so freaked out I didn't have time to expect anything.

Doctors or Celebrities?

Look at these superstars! Left to right, this is Dr. Mark Shaffrey, Head of Neurosurgery, his P.A. in Neurology, Gavin MacCleery, and Dr. Robert Louis (who didn't get to assist with the surgery but was still keeping tabs on me).  We actually saw Gavin in Charlottesville yesterday and he told me the tumor was benign, checked my head, and told Ethan all about how they took off a piece of my skull (sorry!) and then secured it back with a titanium plate and tiny screws (this all sounds cool if you're a guy for some reason).  I felt ill.  I do now.

Cynthia Wagner, Neurosurgery Med Student

Cynthia had been there from the beginning, talking to me before the embolization procedure, and then coming by to check on me.  I had talked to her about whether she wanted to be a neurologist, and she was actually studying to be a neurosurgeon under Dr. Mark Shaffrey.  I was envious of her obvious brilliance, but she was also very kind.  I had kind of stereotyped people like her and was wrong.  I was discovering I had been wrong about a lot of my opinions and thoughts.  This whole experience learned me!

Ames Christiansen, Nightshift RN

I know, I know -- this guy's not creepy at all! But Ames was awesome.  He had gone off to William & Mary some years ago and not quite made it through (I empathized with my Tech experience).  At some point after those "wilderness years" known as the mid-20s, he made an academic comeback and decided to go to UVA Nursing School and was in his second year.  He lived 5 minutes away in an apartment and was still adjusting to working nights.  It had been a hard transition.  He would do my vitals and strength tests, shine a pen light in my eyes.  He made me laugh and didn't look 33.  Because I had so many I.V.s and had been poked so much, he was tentatively trying to draw blood from me and had to call Linda, who got what we needed in like, 30 seconds.  She was a pro. 

Linda Freeman, Nightshift RN

Linda was wonderful and I had her Tuesday and Wednesday nights.  She had been doing the night shift in the NICU (Nerancy-Neuro Intensive Care Unit) for over 20 years and loved it.  Helping me off the bed to use the "commode" one night she gave me a big hug.  I said "mmmm, this is like hugging my mom" and she said: "Where is your mom?" and I said: "Well, I don't really want her to see me like this."  She said: "I have two girls -- I would be sitting outside the door the whole time, don't you have daughters?" I said: "Um, maybe I need to start thinking about this differently." And I saw my folks the next day.  It was the first of several visits from them and I was so happy to see them each time.  What was I thinking?! Moms need to see their daughters!

Meet & Greet

Okay, so I loaded my photos so I could acknowledge and describe the wonderful people who cared for me at UVA Hospital.  Looking at them made me smile and laugh, which was a relief because I was a little nervous about "re-living" the experience.  Hopefully none are disturbing, I left out or deleted some.  Also, in some of these I look much worse than I actually felt, and just really wanted a shower.

This is me the day after surgery rockin' the turban.  The daisy is courtesy of my awesome husband Ethan.

Never a Dull Moment I Guess

So, of course there's the moment you don't prepare for, or, you've prepared for it wrong.  I had assumed I would wake up from surgery free of pain.  I thought I would be so doped up on narcotics or whatever -- there would be no issues.  I had been wheeled reassuringly into the NICU and Dr. Shaffrey had asked me to do some strength tests on my left side.  I was fine for the moment but would eventually lose motor function in my left hand.  Nurses were everywhere being busy.  My head hurt.  It was like someone pulling my hair in one spot or like I had been sunburned on my head.  And I just didn't know I would feel this.  I panicked and started to cry.  I said: "Can I have some pain meds or something because I thought when I woke up I wouldn't feel any pain and I am and I just need help.  This is the only time I will say 2 RNs were in the room who I never wanted near me again.  There was one in the corner going through supplies in drawers and dropping stuff on the floor.  She made a comment about dropping stuff and then said something like -- "well, we'll have to roll you over" and then the second (a hairdresser for 30 years who decided to go to nursing school AND one of the ones who roughly wiped iodine off of me on Monday) said: "Don't cry, you'll just make the pressure worse."  I was at a loss, like, get these women away from me! And it was only ever these two out of all of the wonderful RNs who I did not like and never saw again.

Kendall arrived and crouched down beside my bed.  There's no way to describe how beautiful this woman was.  She had white blonde hair and turquoise eyes which matched her nursing uniform.  I thought of those bright blue icebergs you see in fjords.  Intense but so sympathetic.  I remembered Robin, the salsa-dancing neuro-nurse saying "I hope you get my best friend in the NICU, she's like this Nordic beauty".  She looked at me with those eyes and said "Catherine, we can give you Fentynal, which doesn't last long, or we can give you Percocet which may make you sick."  I chose the Fentanal since I felt sick from the anaesthesia.  It worked of course.  Kendall had saved me!

Ethan was there at some point beside me.  And I think I just laid there the rest of the day.  Until of course the catheter incident, which I swore I would not blog about -- but it just seemed so typical that it would even happen, and that I would find it funny somehow...well, here it is in print! I guess I have no shame.  I had spent a large part of the day trying to pee, just to relax you know, and be comfortable.  I thought I just couldn't do it, I was too high strung to just let it go.  I mean, bodily functions and such are so public in the hospital.  So finally I was able to go.  So, the catheter failed, miserably.  I completely felt like I was 3 and peed all over myself.  Oh yeah, it was horrible.  So embarrassing! Like, I'm already so helpless you know -- let me prove it! Whee!

I used the call button and a nurse came to the room.  I told her what had happened and she said she would go get Linda, who was specifically my nurse that evening.  I waited 10 minutes.  Linda luckily came in and said "How're we doing?" and I told her I about my "accident".  She hadn't even been told yet! She couldn't believe it and felt horrible.  I could hear Led Zeppelin's Communication Breakdown in my poor, sore, head.  Or maybe Neil Young's Helpless was.  I was covered in pee and feeling so sorry for myself.  Ethan was mad with the first nurse who had answered the call.  But, you know, whatever -- Linda (my first night nurse after my surgery) got me all cleaned up and tried to figure out why the catheter had failed.  I think (gross I know) it had been full and no one had checked it since surgery.  But now I had new sheets, Linda to care for me and hunt down lemon Jello, Ethan, and the Olympics (though I was stuck on the wrong channel and perpetually watching curling, feeling stuck in hell).  All curling, all the time...and I still could not figure it out.  

Thursday, March 4, 2010

And then it was over! I need a Twinkie.

So after all of the excitement of Monday evening, I was shipped off to the Nerancy-Neuro ICU.  Two nurses took off my gown and wiped all of the iodine off of me from my embolization.  Talk about humiliating -- but I learned from having babies that there is no privacy in the hospital.  Later on Dr. Weintraub came by to put on these lifesaver shaped things on my head.  I can't remember what they are really called.  He used a disposable razor (ugh) to shave about 10 spots and then stuck those things on and marked them with a Sharpie.  (Was I allowed any dignity? My God.)  Late that night I was wheeled through the empty and breezy hallways of the hospital down to the MRI ladies.  They are right beside the ER but everything was very quiet.  The sensors plus the MRI would help the docs to map exactly where this thing was in my head.

Tuesday morning I had just peed (no bathrooms in the NICU, only a bedside port-a-potty all the older nurses called a 'commode') and luckily was decent when Dr. Shaffrey showed up in his scrubs.  It was 6:30am.  He said something like "Okay Catherine, let's do this, I don't want you to have to think about this all day".  Thank goodness -- first on the list.  I could be awake by afternoon and tumor-free! I was definitely nervous but to tell you the truth -- I was going to be asleep the whole time.  I would wake up and it would be done.  My mind was very still and very calm.  Like acceptance.  Things could just happen without me trying to control them, or stop them.  This feeling is still with me.  I hope it stays with me.

Again I was wheeled through the vast hallways of UVA, down to another part I had never seen before, the operating rooms.  UVA hospital has 28 O.R.s going pretty much at all times.  Incredible.  I got parked in a dim room with my nurses Nancy and Brittany (she was pregnant and we talked morning sickness and kids) while people in scrubs came to check numerous pages taped to the wall of all of the daily O.R. schedules.  An anesthesiologist chewing gum came to ask questions, he was so confident and gorgeous I just remember saying yes to everything.  His partner Holly stopped by and they wheeled me down to my room.  She asked me about my last name DeSilvey and I told her Dennis was my father-in-law.  She said "When I took Internal Medicine, he was a wonderful teacher."  I talked to her about him, my family, and my blog -- to which she said "I had a health crisis a years ago & I wish I had kept a journal, but it affected me so much I decided to go into medicine and serve." She told me I would be alright, pulled up her mask, and looked at me with the kindest, brightest blue eyes. I'll never forget her.  Off I went.

At some point I was dreaming.  It was Josie, Bea, and me.  A very nice dream...I heard voices telling me it was over, and that I was alright.  I said, "I was having a dream about my daughters.  I was buying them Twinkies."  Then whooshed back to the NICU.

Wednesday, March 3, 2010

The Wrath of Khan: Last Monday's Tale

Nothin' but cats and kiddos by my bedside this morning! Though I did *almost* miss Dr. Khaled's cheeriness and cologne at his 5am rounds.  I am not sure how many of you all really want to know the chronicle of my hospital stay from the beginning, some of it may be technical and boring, some parts may be fascinating -- but I need to have some sort of record of it to remember, reflect on, and also to acknowledge those who cared for me.  This could go for DAYS -- you've been warned!

Like I said before, last Monday started off in a funny way.  I saw my friend Leah (a rock for me through this) at Hotcakes for coffee (pure torture since I couldn't eat and they have an endless case of pastries right as you walk in!).  I also had 2 focal seizures there with her, which scared me because I had thought my Keppra was preventing them.

Ethan & I then spent, like, an hour in the hospital parking garage going up and up, trying to get a spot, and then of course, the bathroom story.  Finally in Radiology/Fluroscopy I was swept up by Robin, a neuro-nurse for 20 years ("can't do blood and guts, brains are just gray and boring") and an avid member of the local Salsa Club.  She talked to me about dancing, connecting, South America, being a Brooklyn Jew, and sang along with the cubano music at her desk.  I was there for my embolization but waiting on a 90 year old gentlemen to get an angiogram first.  They had to give up on him because of his poor veins and then scramble to find a bed for him.  I felt sad for him going through that at such an age.

So, it was time to get wheeled into this huge room.  There were about 8 people doing all sorts of prep.  I finally felt fear (damn it)! It wasn't like a "theater" type room, but there were 6 huge digital screens all connected and hanging from an arm from the ceiling and to see my name on each screen made me feel a bit ill.  A sweet nurse made the younger guys go away so she could shave near my groin and said "I'm really sorry but I always give people razor burn".  I laughed.  The three docs came in and lined up along my right side.  Dr. DuMont, Dr. Gahghan, and Dr. Khan.  I could not see the screens and was under this white block which would x-ray my head.  Okay -- it was time for the numbing agent Lidocaine.  Dr. Khan opened up, I swear, it was a foot long needle, made some typical comment about "pressure" (we've all heard that!), and stuck it in my groin.  You just try to breathe while it's happening.  It lasted forever, but worked.

I got sedated though I was hoping I would be completely out.  So, the process goes like this, they run a little wire up to the tumor through the femoral artery, inject dye, find the vessels feeding the tumor, and then inject little beads to close the vessels, and the tumor starts to die before surgery the next day.   Dr. Khan says : "Mrs. DeSilvey, hold your breath!" and injects dye.  He maybe did this about 10-15 times.  This hot sensation goes through the side of your head (it's the same feeling for contrast CAT scans too).  It isn't that painful, but I can describe it as a very quick burst of a headache that then fades away.  They decided to do the left side of my head too.  Thank goodness -- because they found four vessels, 2 from the right side and 2 from the left.  They had thought I only had one or two supplying it.  I could hear Dr. DuMont ( a neuroradiologist, have you ever hear of that?) ordering up all sorts of little beads.  But you know, the sedative wore off and I became very aware of the whole thing.  Stuff going on in my head.  Sensations.  Not good! I felt a bit guilty to interrupt, but I asked for more sedation.  It was a moment for sure, not like waking up during surgery or anything, but knowing a bit too much...like, "this doctor is injecting stuff in my head right now".  I'm sorry if this is gross for you all! It certainly is for me.

The procedure ended and I asked 2 of the other guys if I could look at my head on the computer screens.  I saw the tumor and the vessels leading to it, and it was kinda cool really.  Quite amazing they did what they did.