Roll Up Your Sleeves

A year ago today, I went in for an MRI.

I'd been experiencing migraine headaches that were worse than I'd ever had.  It's scary, the throes of a migraine.  I remember coming home from work, essentially driving with memory muscle because I was in too much pain to concentrate, and explaining to my then 3-year-old what 911 was.  It was time to go to the doctor.

I hate doctors.  Not the individuals, but the experience.  The waiting and the smells and the questions I can't ever answer.  Even before I was pregnant with my kids I was relying on my OBGYN for pretty much everything.  "Hey, while you're down there, can you take a peek at my left foot?  I don't think that bump was there before..."  You get the idea.

I checked myself into a clinic, and they diagnosed me officially with migraines.  For those of you that have this diagnosis, you are familiar with how shitty the information is that they give you.

"Your migraines may be triggered by..... Caffeine, chocolate, cheese, lack of sleep, stress, light, sound, farts, your uncle, any song by Taylor Swift...."  No shit, they have no idea what triggers these things.  So I left with a sample of Imitrex and instructions to find a PCP and follow up.

My PCP is named Stephanie, and she's fantastic.  Fantastic doctors and nurses make an incredible difference, and I've been pretty lucky.  I first met her last April, and we talked about the migraines, my crazy sleep-deprived life with two toddlers, and anything else I could think of.  I talked for over an hour about the silly little things that were "off" with me.  I have a wonky eye, been wonky for years.  I drop things all the damn time.  I can't remember why I went into thebathroom, cause I don't have to pee, so why am I here?  She listened to all of this, then excused herself for a moment.  When she came back it was with a referral for an MRI.  She wanted me to have it as a precaution.

So here I was, one year ago today, taking my anti-anxiety pill so I could go into this damn tube and STAY STILL.  The pill worked well enough, and I asked for music while I was in, so Sara Bareilles helped too.  "Brave" blasted when they put me in.

Afterward, I felt great.  I was done, I had my nifty CD with images of my brain (how freaking cool is that?), and I was off to spend the rest of the day with Mike and the girls.

The phone call came 2 days later when I was home with Mackenzie and Teagan.  I sat at my dining room table while Stephanie told me they'd found some abnormalities in my MRI, and they couldn't rule out MS.  Was I familiar with Mulitple Sclerosis?

When I was a teenager, we used to rent movies (VHS, that's right!) at this place called Mr. Bill's.  I immediately thought of Mr. Bill's wife, who had been in a wheelchair, all but a vegetable before she'd passed.  She'd had MS.

"Is this a death sentence?"  I asked, trying not to completely lose my mind.
"No."
"Okay then, what's next?"

To make a VERY long story a little shorter, it took 6 weeks to get in to see a neurologist.  Six weeks of the Google Monster is a long time.  Six weeks of me trying to "read" my own MRI, which obviously YouTube had taught me well....  no actually, that's a lie.  Don't try that at home, because you'll just scare the shit out of yourself.

Fast forward to neurology.... Standard diagnostic testing for MS is as follows:  Blood tests for 87 things, another Brain MRI with the BIG machine, two different Spinal MRIs, and ..... you guessed it, a Lumbar Puncture.  How fun.  This summer was going to be a fucking blast.

Blood tests, relatively easy...except my veins suck.  They usually need to call 2 or 3 people to stick me.  I just started apologizing in advance, it's easier.

MRIs... bring on the music!  I can do this!  Don't forget that pill please!

After the MRIs were done, my neurologist called me.  It was almost casual.  "Oh, we found some lesions on your cervical spine as well, so look up these medications for treatment options for MS, and by the way, you have enlarged lymph nodes in your chest, so you need a CT scan...."  Ugh, another test?  Really?  Now I'm irritated.

Irritation was my number one feeling.  I had no room for fear, because at this point I'm obviously on an episode of House and they're going to come in at any moment with the magic treatment for my fucking crazy rare disease caused by some spider that hitched a ride from Guatemala and bit me in the ass last February.  There's no other answer.

CT scan, easy, except for the fasting.  I don't do fasting.  I do food and coffee.  Not ok.

Days later, I'm in Giant Eagle with Mackenzie.  Mike's mom had Teagan in another aisle.  We're picking out apples when my phone rings.  I will never forget that moment, and I still don't want to pick apples out at that Giant Eagle.

It was Stephanie.  "Sounds like you've got something going on!"
"Yeah, grocery shopping with my girls."
"Why don't you give me a call back when you and Mike get home tonight?"

My heart stopped, then started racing.

"Well....no, now you have to tell me because I know something is wrong."

It took some convincing, but she told me.

"There were enlarged lymph nodes like we expected, but...the scan caught the top of your liver, and there were two larger blood-fed masses....we need to get you to encology right away.  I'm so sorry."

The "sorry" seemed to echo in my head.  Cancer?  No no, that wasn't right, I'm dealing with diagnostics for MS... now cancer?  How can they treat cancer with a compromised immune system???

I went into mild shock.  I must have given Mackenzie an apple, because she was happily crunching away at it, oblivious to the fact that I was losing my mind.  "We need to go find Grandma baby, let's go find Grandma."  I know I found her, and I told her we had to go, and could she pay for my apples.  I called Mike and told him to meet me at home, it was bad.

I broke down in the car.  "What else am I supposed to handle?  I don't know what I'm going to do!  Why is this happening to me!?"  I remember my mother in law crying, and holding my hand, and asking if it was okay if she said a prayer.

I hope I thanked her for that.

I made it home the same time Mike did, and he held me on our front porch while I emptied out.  He's been a rock, a completely solid rock when I desperately needed one.  Nothing challenges you quite like being faced with the magnitude of these possibilities.  You never know how you'll handle it until you have to, and he handled it and then some.

For 12 days I made plans.  My mom arranged to come up and stay for however long she was needed, etc. The doctor's assistant I spoke with prepared me for the possibility that the cancer had spread to the liver but might have started elsewhere.  I held it together for the most part until I tucked my babies in at night.  Every night I cried thinking I didn't know how many nights I'd have left to do so.

In between I had my Spinal Tap.  They are just as fun as they sound, and the headache afterward was no picnic either.  I recommend avoiding these if at all possible.  That being said, my neurologist that performed it had a sense of humor, and I appreciated that.

12 days... I'm in for my liver biopsy.  Let's get to the good news, shall we?  HEMANGIOMAS!  The ultrasound tech was looking for where to place the biopsy needle and saw a total of 4 masses.  I'm already thinking I'm dead, and then they give me that beautiful silly word.... hemangiomas.  Random HARMLESS blood vessel clusters that I was probably born with .  WHAT?!?!?!  I DON'T HAVE CANCER!

Mike walked into the room and I laughed.  Want some good news for a change!?  Euphoria doesn't begin to describe it.  He put on the Rocky theme song on our way out of the elevator and we danced out of that hospital.  A big fabulous nurse joined us in the celebration.

MS... it began to look so much better.  I can manage this.  I can be better despite, or maybe even because of this.

Then bump in the road... "By the way, your lymph nodes?  Yeah, we thought you had liver cancer, but now you don't, so back to encology you go to check out the chest...."  BAHHHHH!!! Can't I catch a fucking break?

They had to do a bronchoscopy.  They had to knock me out, stick cameras down my throat with a teeny needle attached, and take a sample of lymph node tissue.  We don't go into the other shit they "might" have had to do that I signed off on, because it didn't happen.  The worst part was probably the damn fasting.  Nothing after midnight... I didn't go into ER until after 3pm.  I was begging them to do the procedure by then.  I kept yelling out random foods and making noises like a crazy person.

"MASHED POTATOES!  WITH GRAAAAVY!  MMMMMMMBBBBMMMMM..."

Spoiler alert, NOT CANCER, YES!  Instead, they found Sarcoidosis.  Again, I'm on a House episode.

Sarcoidosis is an auto-immune disease.  MS is an auto-immune disease.  Neurosarcoidosis is an auto-immune disease.  I apparently have 2 out of the 3.  All suck, but are managable, and all mimic each other.

I've been to see a PCP, a team of neurologists, 2 oncology specialists, a pulmonologist, a
neuro ophthalmologist, and a occupational therapist.  I have had 7 MRIs, 3 CT scans, a barrage of blood tests, and IV steroids.  I've had so many appointments that I have officially lost count.  I've been poked, prodded, and essentially told that I'm a gray area.

A year later, and I still have nothing definitive except the Sarcoidosis.  I've been diagnosed on paper with Multiple Sclerosis, but until they rule out Neurosarcoidosis I won't know for sure, and I don't have a timetable for it.

I work 3 days a week in retail.  I'm a full time mother to 2 crazy girls.  I started doing more with my photography right before this shit hit the fan, and I intend to continue to do so for as long as I can.

I forget everything. Some days I can barely see out of my left eye.  I have weakness in my right arm and hand, so I drop things and frequently have pain up and down that arm.  I get so tired that getting up from the couch seems physically impossible.  I'm angry.  I'm sad.  I'm so fucking grateful.

I feel like those cartoons where there is a devil on one shoulder and an angel on the other.  The devil whispers into my ear..."This is the best you're ever going to feel.  This is the beginning of the end.  This is your life now, pain and exhaustion and at any moment it's going to get worse...."

Then the angel (I picture a young Eddie Murphy for some reason) punches that stupid devil in the dick and gives me a slap too.  "Guess what?  You don't have cancer!  You didn't get hit by a bus yesterday!  Appreciate the AMAZING people and things you have in your life!  Be here now!  Know you're only stronger because of the challenges you face!  YOU GOT THIS BABY!"

One of my favorite quotes:  "You can't wring your hands and roll up your sleeves at the same time."

I'm tired of wringing my hands.  I'm going to have bad days.  I'm going to have to sit in waiting rooms and infusion rooms and whatever rooms.  I'm going to be tired.  I'm going to have trouble with things others may not.

But you know what?

I'm alive.  I have a beautiful family and friends and a support system that means more than I could ever express.  I have an incredible house.  I have a job that I like and coworkers that I love.  I have today.  I'll have tomorrow.  And I hope I can help inspire someone along the way.

It's been one hell of a year.

It's time to roll up my sleeves.