Saturday, May 25, 2013

In Which I Drop Off The Face Of The Earth, Part 2

(You can read the beginning of this story here)

Hopkins was a nightmare.  In their defense, I had prayed for God to make it crystal clear what our treatment should be and where we should go, and boy howdy did he ever.  Baltimore is the official sponsor of potholes, apparently, and the idea of driving home after major surgery scared me before we even got to the hospital.  When we walked in, it was overwhelmingly large, and a woman barked at me to know where I was going.  It took 6 elevators 3 turns to get everyone in, and we shared an elevator with a man in a gurney with his face covered with a blanket and moaning in pain. When we arrived in neurosurgery, giant overhead deli-counter signs indicated whose turn it was.  We went to check in, and despite a lengthy process to GET an appointment (I had to turn in information/letters from my neurologist, radiologist who reviewed the MRI, insurance forms, and personal health background just to see IF Hopkins would see me) my information was not on file.  Yay.  

When we went back to see the doctor we'd been assigned to (who is very experienced and I'm sure very wonderful for other people) his resident walked in, did a neuro exam, and asked me about my background.  The doctor came in, repeated this, and then told me that he had hopes for me for a long, happy life after surgery.  He then explained that my Georgetown MRI was inadequate and before he could tell me about surgery, I'd need either a new Hopkins MRI or to wait for them to reformat my Georgetown scans.  That would be a week.  Then, he'd develop a plan and meet with the brain tumor board to go over it.  That would be a week.  Next, he'd look at his speaking schedule, and get in touch with the team he likes to use for operations in the posterior fossa (that's the back part), and get me on the calendar.  I'd be looking at surgery in around April/May.  Edit: Austin reminds me that the doctor came in and hadn't even looked at my scans and tried to tell me that there was probably something in my spine that Georgetown hadn't even looked for and that he'd need all this information and blah blah blah, and Austin, luckily, was like "umm, dude? Did you even look at the MRI?"  The answer, apparently, was no, he hadn't, he just assumed Georgetown hadn't done anything and didn't read any of my medical files before coming in to inform me he knew what was best.  I apparently, had mentally checked out already and couldn't respond to those claims.  Bring someone to your appointments, people.  

Wait a tick, Georgetown had an emergency tumor board meeting, cancelled patients, and says I need surgery NOW because the tumor is so large (they estimated 5 cm, it ended up being between 6 and almost 7 in some directions) and it's starting to cause fluid buildup.  You're telling me I can wait until April or May? 

We asked about the possibility for hydrocephalus, and the doctor assured us that if I got worse, they could just pop in a shunt.  They've done hundreds of these surgeries, I didn't need to worry about it, they knew what was right. 

Cause that's fun. 

We left and I was ready to cry.  This was all wrong, I was a number to these people, another complex surgery to write up, and I was not involved in the process.  I called my friend Lisa, who has a background in brain tumors, and we chatted about my misgivings.  Her feeling was that with brain tumors, you either biopsy it or get it out ASAP because she's known of cases where the "benign" tumor ended up being one of the most deadly you can have, and by the time someone figured it out, it was much too late.  She also assured me that while Hopkins is a great name in tumor care, if Georgetown wanted to make my life and treatment a priority, and I felt peace about discerning that, she felt peace about it, too.  Lisa is a rockstar, and brought me steak before my surgery, which was all I wanted to eat.  She's fully awesome.

So, we decided forget Hopkins, and we set our calendars for February 5th. With great peace. Then, Austin realized that he'd left his laptop in Baltimore when we got home, and we laughed at how clear this decision was being made for us. 

Let's take a moment to discuss the amazing things happening in the background.  My daughter's birthday is February 13th, which I probably wasn't going to be home for, if I was even alive. 
 This is my daughter's 5th birthday party, which my amazing friends and mother put together from my pinterest board.  Everyone took a piece and made it happen, from the decorations to the candy bar, event the insane cake I had wanted to make was there! I'm sure I'm forgetting someone, but Jen, Stacey, Pam, Jennifer, Sheri, Caitlin, and anyone else who made this happen were my heroes.  Caitlin didn't even bring her daughter to the party because she had family in town, she just showed up to help and then left.  Amazing. I had spent all week at doctors appointments (Friday was pre-op testing/interviews at Georgetown- interesting aside- the girl that got us to sign the tissue bank forms (to keep the tumor for research) had forms that expired 5 years ago....and scrubs from Johns Hopkins) and this amazing party happened anyway.
It was very, very important that I didn't get sick, and I was also in a lot of pain and pretty tired at this point, so I got to kick it with a face mask, and much like people visiting a newborn, people were Purell-ed coming in the door.
I wore a mask to the boys' Pinewood Derby, too.  I was really glad that we got to do fun things before surgery, even if I was weird looking.  There are no words for how grateful I am for everyone who stepped in to care for my family.  Sheri took on a meal list and is actually STILL coordinating meals for my family.  My mother, bless her heart, was handed a laundry basket of curriculum and a class/sports schedule in late January when we got my diagnosis and told "good luck" as I headed off to doctors appointments.  My friend Sarah set up a prayer party (because "vigil" sounded like death) and we had dozens of people who prayed in 15 minute intervals starting when we left for the hospital well before the sun was up on Wednesday for surgery.  Another friend, Amanda, had people come and join me for worship and prayer in my home on Tuesday evening.  I cannot adequately express what comfort and joy that time of worship brought to my heart, and all the women who came to be with me and pray for my family and my doctors, and myself were just awesome.  Amanda even played the piano and Sarah (a pastor's wife, but not your grandma's pastor's wife) brought hymnals.  When people broke out into melody and harmony for "It Is Well With My Soul" my heart was so happy!

We have had more people come and bless our family than I can count.  Or send emails for.  Or thank you notes.  We are just dedicated to trying and paying it forward, and I think with the completely unmerited favor that has been shown to our family, I'll spend the rest of my life doing that.  People dropped off gifts for my children, took over my tutoring duties (thank you, Pam!), brought food- even when they didn't know us!- and scheduled playdates or helped drive, and they prayed.  My goodness were we covered in prayer.  Even Austin prayed, and in his own quiet way, took in all the prayers and clear responses of God that were happening, and for that alone, I am thankful. Oh, and my sweet sister in law came to be with my husband.  She made me feel such peace about him waiting for me on the day of surgery, and I know he needed her to be there, too.  My brother stepped in, too, and had picked the kids up after dinner for a sleepover at his house.  He even took the day off work on Wednesday so that he could keep the kids busy and happy.  

I think we would've kept having church in my living room on Tuesday night until I had to leave Wednesday morning, but luckily for everyone else's children, my next appointment showed up.  Dr. Nayar had explained he'd need to cut off portions of my hair, one in the front for my drain, and a long, upside down L in the back for the tumor resection.  I've always wanted to donate my hair, anyway.  A local salon owner came to my house to do it, though, because I wasn't sure about I could do it in front of people asking me why, and because I thought if Jordana (my SIL) did it, that we'd cry, and I was not crying.  We were past the initial 24-hour crying period, so none of that.
Skipping ahead in the story, if you're getting brain surgery, just shave your head.  First of all, if you've never had the chance to sugar-scrub your scalp, you are missing out on one of life's greatest pleasures.  Second, you're going to wake up bloody and gross.  Third, you're not going to want to take care of your hair after major surgery, and fourth, think of all those cute kiddos you could be helping! It is much better when you can provide as much good to the world as possible in the face of something tragic.  Behind my head are socks from my book club.  I wore all of them (and still am) and enjoyed all the tiny treasures and treats they sent before surgery.  The hats were particularly helpful. 

Surgery preparations will vary, but mine included no food or drink starting at 10pm and washing before bed with Dial soap and again in the morning with Dial soap.  I couldn't really sleep, so I wrote Austin little notes to read during my surgery.  They were all supposed to be funny.  Dr. Nayar had guessed my surgery would run between 4-8 hours, and we told people 10-12 so they wouldn't be texting or calling while my family was still anxiously waiting.  I wrote Austin 13 notes, just in case.

We were all wrong. 

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