Wednesday, April 14, 2010

You're always on my mind...

I tried three times to get some home occupational therapy practice by typing with my weak left hand but it was infuriating.  My ring finger & pinky drag along the keyboard causing all sorts of problems.  I even published my half-sentence twice by accident (my wrist caused that).  I'll have to pick a different activity in a bit, like turning over playing cards or picking up the little plastic counting bears.

I tackled our pile of mail today, it's been growing steadily for 6 weeks & I have had to avert my eyes when near it.  (I don't see you nasty pile of mail! I don't!) Anyway, I nearly have all the bills in order.  It actually crossed my mind to use Excel (*gasp!* It IS useful Russ!) to track all the bills/payments and such from 1/24/10 and on...would that bore you to see my bills? Too bad! It's fascinating actually.  We'll see how much time it will take me.  I haven't gotten any bills yet from my most recent re-hospitalization, so it won't include everything.

Instead, I'll try to return to my calm and optimistic self by telling you briefly about last Thursday in Charlottesville.  The MRI was freaky again.  I didn't need a Valium like the first time but a blindfold helps.  I asked for 70s & 80s music & was not disappointed by the radio station piped in through headphones.  I mean, who doesn't love Steely Dan singing: You go back, Jack, & do it again/wheel turnin' round & round: 

(I had to choose a lame homemade video because the others just didn't make the cut).  It's hard to stay completely still when I hear this because it has such a good beat, but while getting the MRI, if you're not still, they have to re-do it.  And then a song I never appreciated until now, "Jack & Diane" (recorded when he was just John Cougar): Hold on to 16/as long as you can/changes come 'round real soon/make us women & men:
This song was the first time I heard the name James Dean.  I was 10 and investigated -- who's that?

Around 1983 I heard of Marilyn Monroe from Joe Elliott of Def Leppard talking about "Photograph" & that started a lifelong love for her.  It's funny how pop culture is inspired by past pop culture.  I've learned a lot just by being a fan.

C'mon, watch it! Look what you've done to this rock n' roll clown!
When I was 12, Duran Duran got their picture taken by Andy Warhol & I was obsessed with him too.  I've always copied.

Then on to Warhol's temporary muse Edie, of course.   Young + Rich + Famous = dead by 27.  I had heard her name but it wasn't until hanging out in Monty Chowdury's basement in 9th or 10th grade I saw her.  Monty's sister Nina (or maybe it was Bella) had painted a huge wall-sized portrait.  I remember the CHS newspaper printing a picture of it too.  When you get older, you start to realize people you thought were cool & tragic just weren't that smart.  And they were also rather empty.  I'd never idolize Edie now, though she had charisma.

Sorry, all stuff that you don't need to know, I just had an 70s/80s moment.  I was more or less in journal-memory-mode instead of present-brain-blog mode.

I was thinking of a blog posting of my late classmate Ernie, who described the MRI chamber as "the loneliest place on Earth".  He got a lot of them, & I will be getting them regularly for a while; then hopefully once every 5 years.  Ernie was right in a lot of ways, it's a cocoon, but a very obnoxious & loud one, and you are there, alone with your thoughts and hopes for a scan showing good news.  You wait for the rescue-squad-siren-scan that vibrates the table you're on (kinda fun) and then the "Aliens" movie-alarm-scan, almost expecting to hear: "you now have two minutes to reach minimum safe distance".  Then they inject you with contrast dye, which you can feel travel throughout your whole body, head to fingertips to toes.  It's a warm wave, then gone.

But -- I have to say, the MRI office at the Fontaine Research Park in Charlottesville is busy.  There are so people many needing scans, I didn't feel so alone.  There was someone before me & after me, all going through the same experience.  That doesn't mean Ernie wasn't right, because it is just you for nearly an hour in that small space, or that I'm not dreading my next one in 6 months.  (I think Ernie would appreciate my 80s segue by the way.)  After the MRI I told Ethan: "all I need is for Dr. Shaffrey to say my head is normal, & I think I'll make it through today".  I had just been discharged from Lynchburg General the night before & still feeling worried and stressed.

I need to wrap this up.  After the MRI we saw Dr. Shaffrey at the UVA Neurosurgery Clinic, and he went over the scans.  Before & After.  I wish I had the scans to post here but the Medical Records Dept didn't have my new ones yet.  My scans looked great.  My brain has already made itself comfy by stretching out and filling the space where the tumor was.  My head looks normal.  Dr. Shaffrey was very happy and quite pleased with the results.  He was almost surprised to find nothing wrong.  He said he had to admit, it had turned out well.  Ethan said: "Dr. Shaffrey, you know it's okay to toot your own horn" and the doc said: "that thing was enormous, no one in their 30s should have that in their head!", I'm very happy with the way it turned out." I said: "If you're happy Dr. Shaffrey, then I am happy!"

Saturday, April 10, 2010

The Slow Fade

A big HI! to those who have stayed with me.  I didn't even want to blog about this last experience but if I suppress it, it will just stay buried somewhere until one day..."we don't know why she pulled out all of her I.V.s, stripped off her hospital gown and went screaming through the halls -- she was such a quiet girl." Sorry, because it wasn't actually the worst experience ever but I was not ready to be in the hospital (jail) again.  Mentally, it was hard to keep it together.

So, I had mentioned I spent 9 hours in the car recently.  Don't do this post-surgery.  I also was on too much Lisinopril (started on 20mg instead of the usual 5-10mg for blood pressure).  Much pain (thought I had an intestinal blockage but a side effect (allergic reaction) is swelling of the intestines).  That may not have even happened but the pain & breathing problems were very real.  I took Benadryl & avoided an ER visit.  A leg cramp developed which I thought was a sore muscle from phys. therapy, but by Easter Sunday I could barely walk & my leg was so swollen, throwing off my balance.  It was a constant charley-horse.  I was very worried about deep vein thrombosis.  The next afternoon, off to the ER anyway.  My sister & brother-in-law graciously babysat for hours since they were in town, having spent Easter with us (& the cousins had a sleepover).  Lifesavers! 

Anyone who has ever been to the ER knows how it goes.  I spent 9 hours there, between the actual ER & the Admissions bay down the hall.  In order not to get angry or freak out, I enjoy watching sports in situations like these.  Before Bea's birth I watched football highlights.  This time I caught the entire "Opening Day" St. Louis Cardinals vs. Cincinnati Reds game.  All 9 innings! Unheard of! I hate baseball! But it is utterly calming when you just stare at it for long periods of time.  Every once in a while I would check the score so I could at least know who was winning.  It also introduced me to a handsome young man named Colby Rasmus:

-- he definitely made it easier on the eyes to watch.  Who needs Pujols? Of course after further thought concerning baseball players (& I had nothing but time to contemplate this), Colby just can't replace my top guy, Tim Lincecum:

So, I enjoyed the game, got an ultrasound of my calf, found out I had a blood clot behind my right knee (my good leg damn it!) & the ER doc (think Ralph Fiennes, but from Boston, and named Dr. Madonick) called my neurosurgeon to make sure it was safe to be put on blood thinners.  Dr. Shaffrey gave him the okay since we were 6 weeks out from the craniotomy & I shouldn't bleed anywhere up there.  My heart sank & I got depressed when I heard the word "admit" though.  I have a minor hospital phobia now & I wanted to RUN.

The ultrasound was easy of course, except for the few minutes I was left alone on my bed in the radiology hallway, waiting my turn, facing the MRI Suite.  I hadn't been there since the day of my diagnosis & it all came back.  What a cliche! Grieving the loss of the "old me" whoever that was, but I miss her.  The new me may live a lot longer though.  But I'll never be the same.  I had to acknowledge this.  I cried and the poor ultrasound girl thought I was mad at having to wait for so long.  I expressed all my feelings to her but she wasn't the empathetic type.  Blank.  Some really young hospital employees aren't used to listening.  Maybe if I had texted it? (Sorry, more bad attitude.)

So, in the ER you hear things.  Here are a few examples: An elderly man yelling in the room next to me between hacking coughs: "Nurse! I'm bleeding again!", retching that sounded like Golem, and between nurses: "Can you do bay 28? It's a car wreck.  I hate doing car wrecks (laughter)".  Crying babies, moaning, "environmental clean up" or "isolation clean up" pages throughout the hallways -- what did I expect? Finally safe in the Admissions bay, Joni from Georgia asked me endless questions, some which we joked about: "Bowel movements? Titanium plates? Yes & Yes!" Dr. Kim, the Hospitalist, finally came to see me, tell me about Coumadin (blood thinner/rat poison) & what a nasty drug it is: .  He was Japanese, with a black faux-hawk, and a shiny pink shirt with even shinier pink pinstripes and black pants.  Very sharp.  The pink worked.  Not a lot of guys could pull that off.  He seemed to say "I'm sorry" a lot but I actually told him I was okay.  Business as usual.

I won't bore you with all the details of this hospitalization, I certainly didn't take pictures this time because I was so mad.  Lynchburg General Hospital's Acute Care Unit is like a hotel.  The East Wing is all private rooms with flat screen t.v.s, nice cabinetry, huge bathrooms, & a fold out couch for guests.  Nice view of the mountains.  This must be to compensate for the quality of their care.  I was admitted Monday night & on Tuesday had no idea if I would see a doctor, get on the Coumadin, or stay another night until I finally had to ask around 3pm.  I brag about my patience but then in times like these I get Ethan on the phone & just lose it: through sobs: "Why am I even here, no one can tell me anything!"  My nurse had no idea, but then again, I had to remind her to give me my Keppra dose.  After he arrived Ethan went to the desk & a Hospitalist, Dr. Woodward, was in our room in 10 minutes.  The end result was I had to stay another night.  If insurance approved the Lovenox shots, we could do them at home, & make our Thursday appt with Dr. Shaffrey for my MRI & check up.

 Wednesday morning I just really wanted to see my daughters.  My mom & dad had come down on short notice and had been babysitting since Monday evening.  A big thanks to them.  I felt very lucky for them to be so close & to have a lifeline.  Ethan's mom had done this for us too.  Another thanks to my sister & her family.  Stuck in bed again, blood work, vitals, Lovenox injections, hospital air, Ethan asleep on the couch next to me, stressed about falling behind on schoolwork, seeing the security camera on the roof out the window, & thinking JAIL...just repeating to myself -- you can make it, you'll make it, you'll make it.  Thinking of Ernie, who did this for eight years.

My last nurse was the best, Sarah S.  She was so attentive, sat on my bed and talked to me, didn't ignore my tears (waterworks man, like all the time -- I can't control it). She hustled too! I got her card so I can write a letter saying what a great nurse she is.  Dr. Woodward gave us the okay to go.  When I said goodbye to Sarah, she said "I don't want you to go!".  I was easier than most.  She had been dealing all day with an elderly patient who was a bit confused & wouldn't let Sarah leave, or would yell "please help me" out her door, or hit the call button constantly.  Sarah was waiting for her patient to be released back to her nursing home so she could have more time for the rest of her patients.  Again, I could never do this job.

Definitely left a piece of myself at the hospital again, just not literally like last time.

Friday, April 2, 2010

Big Mouth Strikes Again

So I'm sorry to have caused shock and awe (thanks for the outrage but I'm afraid I duped you into it) to the few who commented on my Nothin's Free posting.  Of course I was totally wrong.  I deleted the post.  I did some googling today, & still haven't figured much out, but I assumed Rector and Visitors had something to do with visiting chaplains, and mistakenly confused rector for rectory (duh, obviously I'm lacking in this area -- hush now, Lynn).  I'm so relieved to know the chaplains are there, for patients and not for profit.

So, I did figure out the Rector & Visitors run the UVA Medical Center, but on the internet they don't leave much of a trail & are a bit mysterious.  Administrative high places, creep me out a little.