It’s Not A Tumor

I’ve been absent for a long time.  Lots of stuff to work through.  The last time I posted (March), I was preparing for brain surgery to remove a marble-sized tumor in my right temporal lobe.  That’s sort of a heavy thing to wrap your brain around.  (Yes, I meant to type that!)

Despite a few road bumps, all was progressing well.  A week before surgery my surgical team advised me that I would need someone to stay with me 24 hours a day for 2 weeks after I was released from the hospital.  Since I live alone and my family is on the other coast, this sort of threw me into a panic.  But I have wonderful friends and within hours of telling them about the situation, they were booking flights to come help nurse me to wellness.  I’d completed my cross-country train ride, and visited friends and family.  I was ready to face this and remove Zaphod from my life.

My surgery was scheduled for a Friday; I went in on Tuesday for my pre-op.  Forty-five minutes before my first appointment of the day, my neurosurgeon’s nurse called to make sure I was on my way and wouldn’t miss the appointment.  I assured her I was across the street from the hospital and wouldn’t miss this VERY IMPORTANT appointment.

I check in with the front desk and sit down to wait.  Eventually I’m called back to have my vitals read.  Then I’m placed in an exam room and wait for the surgeon.

When the doc walks in, he’s all smiles.

Him:  “Good news, we aren’t going to do the surgery!”

Me:  “Huh?”  (I’m stunningly eloquent when I’m surprised)

Him:  “It’s not a tumor.”

Me:  “Huh?”  (Told ya…and although my surgeon looks nothing like him, of course you can’t hear the above sentence without hearing Arnold…)

The week before I had another MRI that was more precise and was going to be used as a sort of road map by the neurosurgeon to guide him to my tumor and remove it.  The new MRI showed very clearly (apparently) that Zaphod wasn’t a tumor, but blood vessel malformation.  Like my neurologist said from the beginning.  It was the neurosurgeon who said it wasn’t a blood vessel thing but a tumor. 

Three days before surgery.

After three months of preparing for a life-altering event.

And still no explanation for the bizarre, neurological symptoms I was experiencing.

Nothing but bundling me up and quickly showing me the door while I was still stuttering and asking what, then, was causing my symptoms.

*bang* went the door as it narrowly missed my ass on the way out of the exam room into the waiting room.

In a fog of confusion I went to the 6th floor to schedule an appointment with my neurologist.  First available was a week and a half out.  When I was finally able to talk to her, she was as surprised as I was.  But upon reviewing the new MRI she read that the abnormality was categorized as a cavernoma.  She went to consult with other neurologists on staff and they weren’t sure they agreed with that radiologist…they felt it was an arterioventral malformation (AVM).  AVMs are in a more scary category than cavernomas and rate surgery to remove; cavernomas apparently are not at risk to become aneurisms.  So they sent my films out to be seen by a neuroradiologist for a second (third!) opinion.  The neuroradiologist came back that my anomaly was in fact a cavernoma.

No surgery.

Good.  I don’t want surgery for surgery’s sake.  But I do want the damn neurological symptoms to go away!

Fast forward to now.  Still randomly experiencing symptoms.  Next month I’ll have another MRI to see if the cavernoma has changed in size.

Really?  Watchful waiting is fun when you are watching for something in your brain to grow.  (sarcasm, in case you couldn’t tell…)

Sooooo…..in the last five months I’ve been doing a lot of attitude adjustment.  Negativity isn’t pretty, so I’ve been following that rule where if you don’t have anything nice to say, don’t say anything.  Okay, okay…I’ve been saying a lot….just not publically.

By the way, I’ve renamed Zaphod.  Given the current circumstances, I think Abby is a more fitting name.

Abby Normal.

Adventures Abound

I am setting off on an adventure.  A 4-day train ride from DC to California.  The fun is in the journey; four days to sit, watch the country go by, read books, chat with people, and just reflect.  I was planning on just the train trip, visiting with my bestest friend in San Francisco, and seeing my family (mom, sister, nephew, brother-in-law).  Unexpectedly, and happily, I'm going to meet up with an old college friend in Chicago during my layover!  He was able to shift his schedule around to drive down and see me.  It's been far too long, so I'm happy.  An old high school friend has chimed in and wants to grab a quick lunch when I get to California.  What started in my mind as just a journey, is truly turning into an adventure.  I'm like a little kid waiting to leave for the train station! :)

It’s okay to be a little girl

It’s okay to not be the strong one all the time.  The time to come to that realization is not when you are all alone, being slid into the MRI tube for the third time in about five months….second time in five weeks.

I have my Big Girl panties.  You might say I proudly wear them.

But it’s okay to want someone to be in the waiting room.  Or to sit there with you and pat you on the arm.

It’s okay to have people help.  I am bad at asking for help.  I will work on that.

Furiously Good Idea

A guilty pleasure of mine is following Jenny Lawson, The Bloggess (@TheBloggess).  Her blogs and tweets are ….well….real.  And while she has all the normal stuff we all do going on, she also has issues of her own she deals with.  I love her sense of humor in all the dealings (that she shares).  My motto, my family motto, is ‘good humor makes all things tolerable’.  So I’m drawn to how she deals with life.

In the course of dealing with life, Jenny interacts with easily thousands of people.  Jenny is sort of a force of nature.  When she has an idea, quirky or not, she is able to inspire  her many minions to move mountains for good.  One such good idea is The Travelling Red Dress.  (http://thebloggess.com/2010/05/the-traveling-red-dress/)  The Travelling Red Dress represents a lot of things to each individual, but mainly it is hope.  Women from all over donate red dresses and send them to other women needing a boost, affirmation, a laugh.  Other women volunteer to do a photo shoot of the recipient in the beautiful Red Travelling Dress.  It is an amazing project of hope that has been recognized and written up outside the ‘blogosphere’.  (http://www.washingtonpost.com/blogs/on-parenting/post/the-bloggess-confession-about-self-harm-sparks-a-flood-of-positive-reader-reaction/2012/01/11/gIQAf4xeuP_blog.html)

The travelling red dress doesn’t have to be a dress.  It can be anything.  Jenny’s definition is: It’s anything you’ve always wanted but denied yourself because you thought it was too silly.  On 29 Jan, a woman I only know as @nwhepcat on Twitter, offered a red silk scarf as part of the Traveling Red Dress.  I chimed in an hour after her offer that I would love a scarf since I’m due to undergo brain surgery in March.  She responded quickly with “Oh, I must definitely send you one.”  To a perfect stranger.  A couple messages later, she stated she dyes the scarves herself, but will try to have the scarf out by the end of the week. 

The thought of the scarf arriving has made me happy.  I have plans for that scarf.  Before surgery, I’m heading on a cross-country train ride to California to see family and friends.  I plan on documenting my journey with that scarf.  It will be a conversation starter.  I plan on taking pictures with my best friend and me wrapped in the scarf.  Me and my mom.  Me and my sister.  Me any my nephew.  Heck, even my brother-in-law...mainly because he’d probably squirm!  These pictures will do many things for me…but most importantly they will make me smile.

I will use the scarf to cover my incisions as I deal with a partially shaved head during my recovery.  But I will not use the scarf to hide.  The emotional boost I anticipate will be key in my recovery.  I plan to continue to live life and to live life loudly.  Brain surgery will not sideline me.

The best part of the scarf is yet to come.  My surgery is at Walter Reed-Bethesda.  During my recovery, I will search out someone who is in need of the virtual support, the physical boost, that this scarf can give…that it represents.  I *know* I can find someone.  Be it a wounded warrior in the recovery process or the young mother I saw in the neurology waiting room with her toddler.  I will pass the scarf and the story on. 

For me, planning how incorporate the scarf into my surgery and recovery has been a great way to not obsess about the pending surgery.  Planning how to tell the story has been diverting.  Planning to pass the scarf on has been uplifting.

Thank you to Jenny Lawson, @TheBloggess, for the inspiration and to @nwhepcat for joining the ‘movement’ and offering me my Traveling Red “Dress.”

Stay tuned, life to follow.

Meet Zaphod

When I first conceived this blog, I had just suffered a herniated disc and thought the odd neurological symptoms I was experiencing were related to that.  I was looking forward to overcoming the back issues and getting back into training for triathlons.

About two months ago I did a phone consult with Neurosurgery to get an appointment, thinking the persistent symptoms were related to my back.  She consulted the attending docs in Neurosurgery, docs in Neurology, and General Medicine.  She called me back and said they thought it wasn’t my back, but was likely my brain.

Not what I was expecting to hear.

At all.

Fast forward, and I’ve had MRIs and a lumbar puncture (spinal tap).  I’m still waiting the results of the LP because some of those tests take a couple weeks to run.  I met with my neurosurgeon this week.  The MRIs showed a mass in my brain.  Marble-sized.

The neurosurgeon says it doesn’t look malignant.  While he says it doesn’t look malignant, until it’s in a Petri dish, there is always the possibility.  He’s not able at this point to narrow down what it is, tumor on a nerve cell or on the lining of the brain.  My options at this point are to remove the mass (which I would hope helps get rid of my headaches!!!) or to leave it alone and monitor with monthly MRIs.  For the rest of my life. 

So…guess I’m going to be evicting Zaphod.  I realize that sentence makes no sense if you’ve never read Hitchhiker’s Guide to Galaxy by Douglas Adams.  Zaphod Beeblebrox, inventor of the Pan-Galactic Gargle Blaster, is the two-headed former President of the Galaxy.  http://en.wikipedia.org/wiki/Zaphod_Beeblebrox

One thing about me is that I will attempt to find the humor in everything; it’s really the only way to maintain sanity.  Therefore, I named the mass Zaphod. 

Yesterday I met a new friend who went through very similar situation.  One of her questions was, “Have you named it yet?”  I just about fell over laughing since earlier yesterday I had been wondering if I was odd for naming the mass…either I’m not odd, or she’s just as odd as I am.  Either way, it’s a win!

I am going to schedule the surgery for the end of March.  I will run my first half marathon on St. Patty’s Day weekend.  I had signed up for the half marathon before all this popped up and I don’t want the surgery to interfere with it. 

Zaphod and I will be running the Shamrock Half on 18 Mar.  Eviction shortly thereafter.  

Fire Engines as Alarm Clocks

Fire engines suck as Saturday morning alarm clocks.

Actually, they are quite efficient.  The adrenaline they cause is very good for waking, and keeping, me up. 

I live a quarter of a mile from the local station, so I hear the sirens all the time.  I pretty quickly learned to hear, but not be alarmed by the sirens because they were always winding up and continue on the roads by my apartment building.  Over the last seven months, there have been a couple times where the sirens didn’t continue by.  This amped me up, until I realized that those cases were various medical emergencies; usually one truck (on the street, because they can’t fit in to the tight turn-around “lollipop” entrance to my building or the building next to me) and one ambulance in front of the building.  Those still kind of amp me up now, but now in the sense that I’m anxious for the families and I always send a quick prayer that everyone will be okay.

This morning at 6:30 was different.  The sirens woke me up, barely.  Usually if they wake me up now, it’s only enough to tune in and realize that the sirens are continuing on.  I heard the sirens tail-down in front of my building or the neighbor building and thought, “Rats, someone isn’t having a good morning.  I hope everything will be okay.”  Then it really slowly percolated through my brain that I heard more than one truck, and didn’t hear any ambulances.

My eyes flew open.  I leaned out of bed, looked out the blinds, and saw flashing red lights reflecting off the windows across the courtyard.  People huddled in the courtyard

Crap.

I need to describe these buildings, because it’s important to my interest in what’s going on in front of me.  Both buildings have at least 16 floors.  My building is “U” shaped and the building next to me is “J” shaped.  The “J” is splinched to the “U” to form an “E” made of two buildings of different styles.  Really sort of odd looking, that’s why ‘splinched’ is the only word I can ever think of to describe it.  My apartment is where the “U” and the “J” meet; my apartment shares a wall with the other building on the splinch line.  When I look out my windows, I look to the other building’s courtyard, not mine.  So even though it’s not my building the fire fighters are at… really they both are my buildings and if fire would happen to rage through one, the other is at risk.

I was glued to my window trying to take the temperature of what was going on; faulty fire alarm or real fire.  The people milling about were fairly calm and I realized that I could not see any hoses being run into the building.  Of course, there was at least one fire truck behind the building that I couldn’t see, so ‘faulty fire alarm’ wasn’t a solid assessment that I was ready to make.  At this point, I mentally ran my ‘bug out’ checklist as I put on jeans.  No alarms going off in my building, but like I said, the buildings are attached.  And better safe than sorry.

As I was getting dressed, I saw four fire fighters exit the building and walk, at a leisurely pace, back to the truck.  Good sign.  I looked back to the main entrance and saw another come out and give the people the all clear to return to the building.

Whew.

By now, it’s about 7:15 on a Saturday morning.  I think it’s safe to say that I’m awake for the day.  But I really am happy that everything turned out okay and that I didn’t have to bug out of the building.  But I’m probably going to take a nap later…it is New Year’s Eve, after all.