April 6:  The First of Many New Experiences Pt. Deux

I think I’ve updated  the last of my doctors as of last week, when I was surprised to see I had a dentist appointment.  There would of course be the one question I dreaded, the one they always ask when they update your medical records:  Did you have any major illnesses or surgeries since your last visit?  Hoo, boy.  Did I ever.

So I told the dental hygienist, who then told the dentist before the obligatory exam.  I had to go through this conversation with my gynecologist and asthma doctor as well.  It all followed a similar pattern:  The brief moment to digest this rather big piece of news, the expression of concern, the “Well, thank God you’re alright” or similar exclamations, the questions.  Are you alright now?  How long did it take you to recover?  Is the tumor all gone or do you have to follow up with anything? To that question I say yes, but they left a bit in the skull and I’ll need an MRI in September which will determine if I need radiation therapy.  It has progressively become a tiresome subject for me but I do appreciate their concern.  But dangit, I’m okay now! (Aren’t I?)

I have one more milestone to reach, and that is to play with a full band again.  I’ll be accomplishing this at the Christian church that hires me to play bass once a month.  I think it should be fine, but I’m a little concerned about how I’ll endure the long hours of rehearsal.  It could be an issue, as I became dizzy and fell down last week during an evening walk, something that has never happened to me before.  My speech therapist told me it was because I hadn’t taken enough breaks from my events- my brain isn’t used to such exhausting activity now and needed some serious recovery time after the picnic, the presentation and the 80 people touring my office space.  So, I try to take breaks more often. But it’s hard when you’re in the flow and you don’t want to stop what you’re doing just because your Broca’s area wants to nap.

C’est la vie.  On with the show.

April 6:  Random Acts of Destiny (RAD)

“Raquel?” A low voice, unsure.  It sounded vaguely familiar.  Then he told me who he was.

“Hey! Did you call me because of all the hoopla on my Facebook?” I started to ask.  But then I remembered he hadn’t been on Facebook for the last five years.  Why was he calling me?  And why on the hospital phone?

But first a little background on this person.  He was one of the many people we’d known for a gazillion years in the local music scene and we had become very good friends with him and his now ex-wife.  We had lost touch for a while, and during that time she had gotten him a job where she worked as a nurse, which just happened to be the same hospital where I was now waiting for surgery.  Turns out he was in the department that prepared the operating room for upcoming operations, and had come  across my case that afternoon.

“I wanted to know if it was the same person I knew,”he explained.  “I couldn’t believe it was you! Actually, I didn’t want to believe it was you.”  He asked if it was ok to visit that evening when he got off work and I said sure – I would have slept off the meds by then and expected to be alert enough for conversation.

This wasn’t the only weird coincidence so far.  I had also experienced different versions of my name – for some reason there were nurses and nurse assistants or their nieces names Rochelle, Rachel or Raquel.  It wouldn’t have been so strange if they had occurred with some major time in between, but all in 2 days?  This was oddly coincidental.  But it was surely another good sign, or at least it appealed to that superstitious side of me that believed in such things.

He visited about 7:30 pm and joined my husband, who was probably more nervous and frightened than I was.  I think  it was my meds that kept me in a cavalier mood while preventing my brain from exploding. Meanwhile, our friend told us not to worry as  he would personally choose the team that would assemble the operating room equipment, picking over the individuals that were just there to collect their paychecks and didn’t care about how well they did their job.  He smiled when we told him who my neurosurgeon would be, and nodded with approval.

“Don’t worry.  You’re in good hands.  She’s pretty legend around here.  You’ll be fine!”

I had yet to really think about what I was going to go through.  At the moment, I was just happy that I successfully ordered my dinner.  Tomorrow’s surgery was tomorrow – I’m going to enjoy this chicken pot pie now, damnit!

After our friend left, we amused ourselves for the rest of the evening watching some animated shorts on his Kindle.  One was a brilliant piece from France involving a master thief, a two-timing cat, and a female police officer who was widowed and a single mother.  We started to watch a second one that looked just as good but I was too tired at that point.  But I knew that once I fell asleep, the surgery would be imminent. Fear finally peeked its head out of the room where I had imprisoned it.

“Ok.  I’m officially freaking out,” I announced.

“You should take something to help you with anxiety,” my husband insisted.  I said I would when someone checked on me again.  A nurse came in as if on cue and I told her I needed something to calm me down before my surgery tomorrow.  “Of course,” she said with a patronizing wink. “I’ll be right back.”

Satisfied that I’d soon be sleeping my fears away, my husband left and the nurse returned shortly after.  She asked if I wanted Xanax or melatonin, which I’d never had before.  I decided to try something new and chose melatonin, the more natural sleep aid.  It helped me briefly.  Not even two hours after I fell asleep, I woke up alert and crazy anxious to the sound of loud voices coming from my roommate’s TV.

She was there for symptoms that suggested multiple sclerosis and I felt bad that I hadn’t made any effort to talk to her yet.  Of course it wasn’t possible in my state – I had a hard enough time talking to family members, and I was getting more distracted by my roommate’s guests whenever I tried to have a conversation.  I kept having to start over.  Eventually my mother had told me it’s ok to just stop talking for a while.  She had such a look of quiet, sad concern on her face when she spoke.  Is this how people treat you when you’re dying? I wondered.  Maybe this is how it’s going to be when I’m sick and feeble, and people are helping me to the bathroom and humoring me and talking quietly within earshot as if I can’t hear them.  

I don’t like this, I thought.  In fact,  I hated being helpless and bedridden. It really, really SUCKS.  I consciously decided that this would end soon, and started visualizing a positive outcome. I turned on “King of the Hill” hoping to drown out the other TV, but when I started seeing two Bobbys I turned it off.  I had never had double vision and wondered if it was another symptom associated with my tumor.  But it was probably the melatonin – Xanax had never had that effect on me, so I didn’t mention it to anyone.  

I worried for my husband, and knew it was going to be another sleepless night for him. and thought about all the people that were praying for me, and my poor mom who had to deal with me and my older brother who was also having surgery that month on his pancreas.  I asked my husband to read me the list of “20 Things to Expect After Brain Surgery” again before he left – possibly the closest thing to a bedtime story he’d ever done.  Earlier that day, he had taken me to the pediatric floor with the garden and Dr. Seuss themed play area, where he had taken his father years before.  I lay in the dark, Judge Judy and Hank Hill battling for my attention, and remembered sitting quietly for a time on a bench enjoying the green stillness.  I thought of the warm sanctuary of his arm around me as I rested on his shoulder, and how comforted I was by his nearness.

Then we had gotten up to face the rest of the long day.  As we entered the elevator,  we spoke the wordless language that exists between married people of over 20 years – a certain gentle squeeze of the hand,  meant to convey reassurance in the midst of fear and uncertainty.


April 6: The First of Many New Experiences

I’m sitting at my desk, feet aching and listening to bootcamp downstairs.  We had a major group of people visit my company (like 80, plus their Global CEO) and so I’m just a little tuckered out.  And due to the complicated nature of my dress, I’m sitting out on bootcamp today.

My presentation on aphasia and paraphasia went well, despite my anxiety about stammering and embarrassing myself in the middle of it.  People asked me questions after and congratulated me on how well I did.  Whew!  Days of preparation in five minutes of execution – just like a gig.  I went first and got it over with.  The only thing I felt could have been better was my example of Broca’s aphasia, where I purposely spoke haltingly to demonstrate how people speak when they have this disorder.  I don’t think it was dramatic enough, which is funny because I actually had it pretty bad once.  And still do, but only mildly now.  Among other little things, which is why I started the therapy for real instead of relying on online games that profess to improve your intelligence.  Oh, what a fool I was!  But it works out better now that I can drive myself  and not rely on my husband, who had already taken enough time out from his work to take care of me.

So there’s that.  Now, this:

They woke me up about midnight and I was taken to get my MRI, which was most likely on the same floor where the CT scan took place.  Now this I had never gone through.  I had heard it was loud and took a long time, and people with claustrophobia didn’t do well with it.  I didn’t have such a phobia, and so decided I would get through it just fine.  Besides, I was still groggy from the restless night I was having and hoped to snooze through the whole thing.  Because let’s face it – you don’t actually get any rest while you’re at the hospital.  Every few hours, someone is checking if you’re still alive, or giving you medication, or taking blood.  Or someone is screaming bloody murder down the hall….

The MRI was, in fact, very loud.  Imagine trying to lay quietly and not move while construction level noises are going on around you, and waiting patiently until it’s over an eternity later.  A rhythmic clanging took place every time it took an image, and while they offered me Pandora through headphones (I was very lucky to have Court of the Crimson King come up) it only helped if I concentrated very hard on the song:  

CLANG CLANGThe purpleCLANG piper CLANGplays his tune,CLANG the choir CLANGsoftly sings,CLANG three lullabiesCLANG in anCLANG ancient tongue, CLANGfor the court of CLANGthe Crimson King!

And then it was done and they returned me to my room, where I attempted sleep for another few hours until the doctor arrived.  I also attempted to order breakfast over the phone.  I had one hang up because I couldn’t get the words out (which was all kinds of awful) – then I wrote it down and used my notes to successfully order.

My husband returned to my bedside a little later.  He hadn’t gotten much sleep, and was already surviving on pure adrenalin and worry.  The doctor then arrived – not at all like my preconceived notions of a neurosurgeon.   First of all, she was younger than I expected – though by that time I should have been used to seeing youngish doctors.  I had envisioned an older person in a white lab coat with no sense of humor, but she walked in with a North Face jacket and looked quite approachable.  She was accompanied by another woman who was introduced as her assistant.

She told us it did look like a meningioma, a benign tumor, and confirmed its size equivalent to a baseball, but with larger, more accurate measurements than the day before.  Fortunately, she added, it wouldn’t be hard to remove as it was placed in a very operable location, and she had done many operations like it with success.  My surgery would take place the following day at 4:00 pm and probably take 4-5 hours.  I would probably spend a day or so in ICU recovering, then get looked at by a speech pathologist and an occupational therapist who would determine my follow up therapy.  

“Do you have any questions?” she asked, addressing both of us.  My husband asked the one concern that was on both our minds.

“Do you know for sure it’s benign?  Is there any chance it’s cancerous?”

Her answer was very reassuring.  “Not likely.  The majority of meningiomas are harmless until they start making some trouble – like in her case, when it was large enough to cause headaches and vision problems and muscle weakness.  But we’ll send a sample to pathology and have a biopsy done just to make sure.  That could take several days, but we’ll send it during the operation so they can get started.”

I was satisfied – cancer was unlikely, though not entirely ruled out, so just get through the surgery.  I decided my physician was trustworthy, nice, and seemed very experienced.  She immediately instilled confidence in us that all would be well.  I noted her name on the handwritten assignment board in front of me, which I kept mixing up with my husband’s cardiologist whenever someone asked me the name of my doctor.

The rest of the day was spent emailing.  This  included a nonchalant email (subject line: Best Excuse to Avoid Opening Day) to my workplace, sharing the news with former recent bandmates, cancelling my hair appointment and any upcoming cake orders.  It was very surreal typing  “found a mass over my left frontal lobe” and realizing I had no previous experience with this sort of thing, though I’d had my share of hospitals and surgery in my life.  My husband had found “20 Things to Expect After Brain Surgery” which was helpful. But  would I come out myself in the end?  What would happen to my thoughts, my personality…the me that was Me?

My mother asked if I wanted my twin brother to come in from Chicago, and I said yes without hesitation.  If this was the last time he’d know me in a normal state, then he’d better come now and not after the operation.  Some other friends asked if they could come but I had already taken some medication and expected to be too groggy to communicate, so I said no, better come tomorrow if you can.  Plenty of time before the operation to see me before I turned into a drooling vegetable, I thought morbidly.  

So I emailed, texted, slept, visited with my mom, slept again.  In the early evening I was surprised to hear my bedside phone ring.  I picked it up, hoping I could speak clearly as I was slowly losing that form of communication.

“Raquel?” A low male voice, unsure.

Easter Sunday, and Some Light Brunch Conversation Part 2:  Emergency Room Shenanigans

What a week!  Turns out multi-tasking is a little more difficult these days. It’s just a little harder to think – what used to be semi-challenging and slightly exciting to me is now a source of anxiety and confusion.  Take the company picnic for example, which I’m accustomed to taking on on with a little more grit, but in this new normal I’m feeling overwhelmed.  It’s a lot of planning, making lists, going to the mega stores to buy the food and supplies, etc. Fortunately, I had some help, and that was very comforting.  But someone has to mastermind everything, and I was determined to keep it together.  I also knew that the day of was going to be hard, and my executive functions were going to be at full capacity what with all the grills going, food prep, various people and children asking me questions, observing everything going on and seeing who needed help or had a confused look on their face.

But despite my worries and the summer heat, I got through it – with only occasional brain struggles.  The picnic was a success and from what I could see, everyone had a great time  (insert pleased and happy emoticon here).

I’m also preparing a five minute presentation for Monday on paraphasia, which I am currently suffering from in a minor way.  I’ve never done a presentation before, and public speaking terrifies me in general.  But I decided it would help my condition and also educate my co-workers.   I told my speech therapist about it at our last session and she smiled and said, “You really like to take on big challenges, don’t you?” She thought maybe I could use some more time, as the main focus of the week should be picnic planning, and perhaps I should reschedule it. I said no, it’s too late, I’m on the list of presenters.  Then when I showed her my extensive notes I’d gleaned off the internet, she decided I was closer to being ready than she thought and went over them with me for accuracy.  She agreed that it would help me with my paraphasia.  Actually, everyone I’ve told has been very supportive,  so I’m feeling very confident about getting in front of about 30 of my peers with a technology I’ve never used before and talking about a communication disorder I didn’t know existed.

Gulp.  But I’ll get to that after I send this out.  On to the aforementioned shenanigans!

April 5:  Easter Sunday and Some Light Brunch Conversation Part II

I fully expected to spend many hours in ER only to be told that it was nothing and be sent home with a prescription.  My husband told me to say it was a possible stroke to get me looked at more quickly, so that’s what I told the desk person.  Then I realized how ridiculous I sounded.  Does a person with stroke symptoms walk up and tell someone they’re having a stroke without the aid of a wheelchair, as is the common practice when you get to emergency?  This and the fact that I waited several days to say anything was enough to rule out stroke altogether.  So we waited patiently in triage for someone to look at me.  It would be hours before a doctor finally came, as there was the typical large amount of holiday emergencies filing in and my problems weren’t life threatening. We occupied our time watching the parade of Easter Sunday casualties, sustaining various injuries and moans of distress.  Periodically, my husband would check with the nurse in charge as to our status.

Finally, a doctor came.  He was young, olive-skinned with dark, wavy hair and a neatly trimmed beard and slim build.  Kind of a Dr. McDreamy, actually.  Exuding calm efficiency and skilled bedside manners, he asked what brought me to emergency.  I looked him right in his big brown eyes and listed off my symptoms:  migraines, confusion speaking, right leg being bratty.  He then asked if I’d had any vision problems, and I related the Costco incident, which I forgot to mention.  After that he asked me to pull his hands with both of mine, pull back my feet while he pressed on my toes, touched one side of me then the other and asked if it felt the same, looked at my eyes with a special hand held light and had me look in different directions.  I think he was doing some kind of neurological testing, to see if both sides of my brain responded equally.  I’d never had such an exam before, and it caused me to wonder mightily what might be wrong with me.  After he was done he crossed his arms, the universal signal for a decision about to be announced.  

“It’s definitely not a stroke, but I’m going to get a CT scan done to get some more information and hopefully rule out some other things.  So sit tight and I’ll get that going, ok?”

Well, it’s probably nothing, I thought.  They’ll do their expensive CT scan and send me home soon.     My husband left briefly to call his mother in another area, leaving me alone.  Then a second doctor came by, late to the party but apparently doing rounds anyway.  This typically happens in emergency rooms, and you have to go through your symptoms again.  He was older,  and not so skilled in the bedside manner area as he said something unexpected and rude while I was describing my headaches.  Let’s call him Dr. McUseless.  I never saw him again after that brief exchange.   Then two orderlies came and took me to the CT scan via an elevator and various hallways, and I tried to remember if I’d ever had one before.  

It’s a curious thing to give up all decision making and basically hand your life over to other people for a while.  The last time I traveled in this manner through hospital corridors was in 7th grade, when I was hit by a car and broke my right femur.  Life is suddenly simplified to a general feeling of calm, a cool breeze from forward movement and the sound of the wheels passing over the gentle bumps and occasional rough surfaces of the floor.  Kind of lovely until you remember where you are.

They left me in a waiting area to be retrieved by the techs, who took me into the room of CT scans.  It was very beige and pristine.  The CT machine sat in the middle of the room, curvaceous and non-threatening and I was assisted to the table that would slide into it.  The whole procedure didn’t take long and when it was done the tech came out asked me what I’d been experiencing as far as symptoms.  I repeated what I’d said to the two emergency room doctors but really had some trouble speaking. He noticed and said “Not feeling like your usual self, right?”  I said yes, and he disclosed no more information but told me I did very well.  Then I was returned to the emergency room to await the results.

Dr. McDreamy returned to my little curtained off room about a half hour later and got right to business.

“There appears to be a mass about the size of a baseball over the left frontal lobe of your brain. That’s why you’ve been having trouble speaking.  That area controls speech.”  He spoke very evenly and without the serious tone I was unconsciously looking for after he mentioned the word “mass”.  

“ I believe it’s a meningioma, which is typically benign but I’ve contacted the brain specialists who can take it from here.  We’ll get an MRI done next to get more detail and you’ll be staying overnight until it’s reviewed.  Someone from that group will talk to you tomorrow about what comes next. Ok?  Any questions?”  We said no, that was enough to think about for now.

Well, I thought. That explains everything. Must do something efficient now to keep this all from sinking in.  

To the three founders, I group texted that “I am in ER, they found a mass in my brain, will update you with more news but not coming in tomorrow.”  I wondered where they were individually when they got my message and hoped I didn’t ruin their Easter Sunday.  I said about the same to the band leader but ended with “Find a sub!”.  Really, mysterious mass in my head.  How rude of you to inconvenience so many people like this!  I had some cake order people to contact too, but that could wait.  I quickly updated my mom as well, and then they came for me.

An IV was started, and a corticosteroid called Decadron was administered to control any inflammation taking place.  It burned as it entered my bloodstream (was NOT expecting that), and hurt worse than the IV going in.  They told my husband to meet me in 8 South, then we went our separate ways.

What did he say I had?  Mena..something?  I was still obsessed with the word “mass” – which to me meant tumor which almost always meant cancer.  I managed to put Fear in a comfortable room somewhere in my mind for possible later release and once again enjoyed the ride to unknown parts of the hospital.  

It took a while to get to my destination.  I was impressed with the young female orderly (man, why was everyone so young here?) who was skillfully maneuvering the Byzantine path to my room.  At one point we went through a dark area of the hospital and I remembered how late it actually was – of course this area was dark and unoccupied.  We then passed through a normal ward where I expected to be dropped off, but then we kept going and I saw the majestic signage of the neurological wing ahead.  This was probably the first time I acknowledged what was going on and how serious matters were.  However, the sign was impressive.   It conveyed one message through its simulated maple and elegant silver embossed font:   Rest easy, and expect nothing but the highest level of professional care.  

Much like the cancer ward, where my father had spent the last days of his life.  (What’s that, Fear?  You just want to use the bathroom for a quick sec? Ha.  Nice trick.  Go piss in the bucket I left you.)

Finally we arrived at my room.  My husband was there, and two male nurses helped me get comfortable.  To the left of my bed was machinery monitoring my vitals and then they put leg compressors on my calves that would inflate periodically to help circulation since I was bedridden.  I was instructed to ring for assistance anytimeI had to use the bathroom, or an alarm would go off on my bed if I went without help.  Then they left, and my husband and I were alone again.

He looked exhausted.  He asked if I was alright and then we addressed the elephant in the room, agreeing that we wouldn’t worry until we had to.  “I’ll be fine,” I assured him. We both knew there was more to come, and that tonight was only the beginning. Then he left, and I was alone.

 I was without him or my cat and far away from everything that made up who I was.  I  wondered, briefly before I fell asleep, if my father was watching over me.  

I hoped so.

April 5:  Easter Sunday, and Some Light Brunch Conversation

I went back to bootcamp.  This is an ongoing thing we have at work – basically you sign up to undergo torture by a sadistic trainer for 45 minutes, work out to a point where you’re either about to pass out or heave your lunch, then high-five after it’s over because you survived without incident.  Oh, how I’ve missed it.

I also decided to have some additional therapy and address some cognitive issues I’ve been having recently.  Just your basic communication type stuff, but I do want to see if I can improve areas of concern. Like talking to people I don’t know, or not being able to figure out what I want to say though the thoughts are there.  And typing the wrong words out in emails, and spelling things out loud.  It scares me, frankly.  I thought I was done with such things but apparently not – no amount of Lumosity or Elevate games are going to help me with speaking and clarity of thought.  I think it’s because I’m aware of too much sometimes, and it makes it more difficult to speak when your brain is processing something going on across the room.  Looking back I think I should have done the therapy earlier, but I was afraid it would have taken too much time out of my husband’s schedule as I wasn’t driving yet.  He had his work to get on with after all.  But it’s said strength not only means you can kick some ass, but also knowing when you need to ask for help.   Or something like that.  I’ve often thought that asking for help meant weakness of character, but this experience has caused me to rethink a lot things.

Some lovely interaction with old friends lately as well.  It’s very moving to see how they react when they finally see me and aren’t just hitting “Like” on Facebook whenever I announced another milestone.  Some very surprising, sincerely emotional moments have been experienced.  To think I caused such a reaction with people is mind-boggling, which leads me to a theory I came up with the other day:  Our existence is made up of a connection of mathematical equations, and if one of those numbers becomes compromised or disappears altogether for some reason, then we feel it in our being that something isn’t quite right with the Universe.  We’re all numbers and symbols in this cosmic theorem, you might say, and should one of us become seriously ill or die…well, everyone in that particular formula is affected in some way.

Wow.  That’s some crazy shit I just put out there!  I hope that almost made sense. If someone could please tell me I’m not going all Howard Hughes, I’d appreciate it.

Back to the story.  I can only compare it to the plot line of a failing soap opera – you know, when something tragic happens to a main character in hopes of boosting ratings?  Yeah.  Something like that.

April 5, 2015

I had a leisurely morning, then chose a charcoal grey jersey dress with big side buttons on one shoulder and a dramatic high collar.  No flowery Easter dress for me – it’s grey and somber all year round!

I had left my house about noonish.  We had brunch reservations at 2:00 so I wanted to gas up before I picked up my mom and grandfather at the nursing home where he lives.  I had already studied the menu online and was looking forward to the nutella crepe I would soon consume.  Or would it be the salmon omelette?  Decisions, decisions.

I was in a good mood.  I had stopped taking the antibiotics – my mom had made me call the after hours doctor the night before to tell them about my recent headaches – and they said to discontinue taking them and drink lots of fluids to flush the medication out of my system.  That morning I was headache free, so I took it as a good sign.  

I pulled into a gas station not too far from the nursing home, and as I got out of the car I was struck with that weird feeling in my head again, the same one I’d had outside of Costco.  Ok, I rationalized, this is just the antibiotics still leaving my body.  I’ll be fine.   

I struggled through muddled, cloudy thinking as I swiped my card and filled my tank.  I got back in my car, still struggling with my thoughts, and discovered my right leg had become a little lazy.  I had to actually say in my head “Move to the pedal.  Now to the brake. Now back to the pedal.”  and it begrudgingly obeyed. I decided it was too dangerous for me to drive in this condition – I imagined angry honking prior to the screech of tires and the loud impact of metal on metal as I caused an accident.  Well, this was a poo-poo change of events from how my day started!  I decided to have my mom drive to the restaurant, knowing she’d be angry at me for making her drive unknown routes.  But better to endure her wrath then face charges for involuntary manslaughter.

I chose the safest path out of the gas station and headed to the nursing home, where I told my mom about my leg issues.  Predictably, she made the disagreeable mom frowny face, but complied.  We arrived at the brunch spot and waited for my husband’s arrival.  That’s when I had another bad heachache,  though nothing nearly as painful as the ones I had experienced.  But it was bad enough for me to call him and ask if he could bring some aspirin.

He got there, dropped the aspirin in front of me, and as we were going over the menu, it came up in conversation that my mom had driven us there because I was having trouble with my leg.  My husband looked up in alarm.

“Oh, yeah,” I explained.  “I had her drive.  It seems to come and go – I’m sure it’s nothing.” I quickly changed the subject.  “So what are you having, Ma?  I’m having this nutella crepe!”

“Wait,” my husband said, putting his menu down.  “Don’t you think you should call the allergist’s office and ask how long it takes for the medication to leave your system? This sounds like a stroke symptom to me.”  

“Yes, and she seemed confused last night – I had a hard time understanding her,” my mother added.   I was about to defend myself when the server returned to our table to take our order. After she left, the conversation continued.

“So these headaches,” my mom said.”They sound like migraines.”  

“Yeah, sure.  Probably.”  

“I started having migraines when I was about your age.  Did you have to go in a dark room with a cold compress on your head? Were your eyes sensitive to light?”

For a moment I had been relieved to hear the suggestion of a migraine but now I wasn’t sure it was one.  I said no, I didn’t have any light sensitivity.  And it always happened in the early morning and went away.

My mom, the not quite retired registered nurse, was stumped.  Our food arrived some time later and I noticed everyone gradually eating a little faster as gears were turning in their heads. Brunch was pretty much ruined at that point, and no amount of Nutella could distract them from the medical mystery at hand.

Wedecided that I should call the allergist’s office and see what they advised – if I needed to go to emergency or if these strange symptoms would eventually go away.  I hoped for the latter.  I did conveniently forget to tell them about my vision problems from the day before.  Or maybe I thought they had enough to worry about already.

I drove back to my house with my husband’s van and he drove my mom and grandfather back to the nursing home.  I called the allergist’s after hours line as soon as I walked in the door, and asked about how long it would take for the medication to leave my body.  Her answer was unexpected.  She said I shouldn’t have any trace of it left in me by now and that I should go to the emergency room right away.

It is in times of crisis that I settle into a calm, non-panicked state of mind.  I coax my thoughts from leaping to conclusions and keep myself only in the moment, and concentrate only on what needs to happen next.   We were soon on our way, packed with only the essentials: crappy clothes that I wouldn’t miss, iPhone charger, and my work laptop.  I even had the foresight to take my contacts out and wear my glasses should they keep me overnight for some reason. I was ready for anything, but mostly for just spending many long hours there and having nothing be wrong. 

End of Part One!  I’ve decided it’s more realistic to get one of these out every week instead of every few days, so in Part Two of April 5, I’ll elaborate more on the emergency room shenanigans.

Riveting, isn’t it?

April 4: Science Fiction Double Feature

Just coming off a serious sugar crash – I made a giant chocolate cinnamon cake for one of the teams here as a reward for reaching a milestone.  Last week, one of the founders politely asked if I was baking again, and if so could I make a little something for the group who had worked so hard to reach their goal.  After about 10 seconds of intense decisiony thought processing, I said yes.  For you, dear, anything.

This is one of the founders that came to the visiting room the day of my surgery.  He came with appropriate recovery related gifts for someone about to have their melon muddled with:  graphic novels, a bizarre coloring book involving celebrities in varying surreal states, and a very expensive looking tin of colored pencils.  But that part of the story comes soon enough.  The sugar fog is finally lifting so let’s discuss a day that began like any other day – the usual way to set the scene before bad things happen.

Saturday, April 4, 2015

To-Do:   Costco for script, start mini cupcakes for event Thursday, Saturday mass with my mom followed by dinner somewhere near the church.  

I started driving to Costco at about 2 p.m. when I started feeling mighty strange in the head.  A kind of absinthe buzz, I think, but not really conducive to writing poetry or self-destructive bohemian behavior.  I felt incredibly fatigued, and just stood there with heavy eyelids and heavy everything as I decided to forego trolling for food samples and get my business done quickly.  Mentally I moved tasks that were planned that day to Sunday after Easter Brunch, as I dearly wanted to just go home and nap.  

I arrived at Costco and got out of my car, and found that I had to really concentrate to move myself along.  I wondered if my gait was any different.  Was I lumbering, zombie-like, as I made my way to the pharmacy and did the exchange of drugs and credit card swipe that I couldn’t quite remember?  A panicked moment followed, dulled by fatigue. My thoughts came like the slow train to Clarksville, chop-chooing along as if on quaaludes.  Did I actually pay for my stuff?  Huh.  Oh, yeah, it’s in my hand.  I must have. )  Then it was a mission to get to the car without incident.

Upon reaching my vehicle, I looked back at the Costco building.  From the left side of my vision, there was a fragmented line of refracted light making its way slowly across the side of the building, starting from the bottom and fading towards the top.  It crept slowly across like some science fiction movie effect, other-worldly, mysterious.  I’d never experienced anything like it before, and found it oddly beautiful in its alien elegance. I checked to see if the cement blocks were disappearing or morphing in some way as the zig-zaggy line passed over them but sadly, no such thing occurred.  I was mildly disappointed.   It seems that I should have reacted otherwise to all of this (like maybe a mental note that what I was seeing was far from normal) but common sense was feeling pretty tuckered out along with the rest of me. When I finally got home I went right to bed.

Before immersing myself in blissful slumber, I sat on the edge of my bed and looked down at my feet. My friend the refracted light line had returned to appear on my bedroom carpet, undulating towards me from the left.  Oh, that’s going to be gone after I wake up, I decided.  And sure enough, it did go away, never to return again.  Giving me yet another reason to not tell anyone about what was happening to me.  (Well, it was gone, wasn’t it?)

Later internet research revealed a few possible headache/migraine related causes – scintillating scotoma, migraine with aura, and someone later claimed I was having a mild seizure.  I didn’t have the pain or light sensitivity usually associated with migraines, so maybe it was a seizure after all.  But could I have driven home during one, even if it was mild?  None of the doctors mentioned the possibility. I guess I’ll never know exactly what caused it, only a mild yearning for the wild beauty that turned an ordinary day into something slightly more interesting.