Malignant neoplasm ... I'm calling it "Wilma"

After all this time trying to get rid of Wilbur, it seems there's a new kid on the block that I'm now referring to as Wilma.  As many of you already know, I started taking chemo August 2018.  A low dose that I ended up taking daily for 14 months (I was told to stop on October 2019).  My initial results were promising and had signs of shrinkage.  I had MRI's in March and June 2019 that were considered stable, and I had hopes to see my neuro-oncologist at Duke this fall and stop taking chemo.  But there was a hiccup.

In September, I decided to take a week vacation to New England.  I was hoping for some brisk fall temperatures and the beginnings of the foliage.  I went to New Hampshire and Maine (two states I had never visited before).  While I did get SOME foliage, I took the heat with me as I drove north.  I told everyone "You're welcome for your last weekend in summer!"  I don't what happened the last couple of days of the trips, maybe I pushed too much to get home from Maine, but that next week I reached out to the team at Duke about new seizures.  I started a new medicine and made an appointment to see Dr. R.

On the October 16, 2019 MRI, my doctor wasn't happy with what she saw and wanted to see the results of another MRI in a months time.  Since I'm been having increased seizure activity, I wasn't initially worried because of the way seizure activity shows up during an MRI with contrast.  I had the second MRI on November 16, 2019 and my doctor called me to discuss the results and next steps because something was going to have to be done.

In that month that I had been off chemo, I could tell sometime wasn't right.  At work, I'd started having problems remembering numbers and/or getting them in order.  If someone started talking to me really fast on the phone, I'd have to slow them in order to get the needed information.  I'd also started losing feeling on the right side of my body.  That made things interesting for typing, I'd miss letters completely or accidentally hold a key I wasn't trying to use.  I remember joking with the MRI technicians in November that it didn't matter how they did the IV this time because it wasn't going to hurt me cause I couldn't feel (Keep in mind, the IV is usually that ABSOLUTE worst part of any procedure for me)

I got worried the Sunday before Thanksgiving.  I wasn't feeling good but couldn't describe what was really going on other than a headache.  I tried calling my parents and couldn't get through because they were attending the community Thanksgiving worship.  I could remember the number for their house (which has been the same my entire life) but I couldn't correctly dial either of their cell phones.  Frustrated, I closed by eyes and tried to rest so the headache might ease.  Later, I was aware enough to call my Uncle Andy to have him track down my parents, which he did.  Mom called my brother to come watch me until they could get to me, he'd had to drop by work that evening and was nearby.  I decided not to go to the hospital but, so I wasn't alone, Dad stayed over the next two nights.

Right after Thanksgiving, I got a call from Duke about scheduling a biopsy. I thought things were moving along only to find out I'd hit a road block with my insurance.  The whole was so frustrating.  Mom and I were at my kitchen table having simultaneous conversations with three people at Duke when I finally asked Mom to reach out to our local healthcare navigator to see what could be done in Charlotte. Angela had me an appointment with an in-network specialist while we were still on hold with Duke.

On December 6, Dad and I made our way to Charlotte to meet Dr. Stettler.  I admit that I lost it when his nurse stepped out of the room leaving the MRI images visible on his screen.  I could tell there had been significant changes from the MRI in October.  The next steps were going to be a functional MRI at the end of December with my case being presented at the brain tumor board.  It seemed that all I could do was wait while my symptoms worsened.  At my family Christmas on December 14, it was hard to realize that I couldn't fix my own plate and that I was going have my left hand because my right was useless that day.  That Sunday, I was scheduled to work and made it in. I worried my work family enough that they called my parents to come pick me up.  I haven't driven since that day.  I told Mom to contact Angela first thing Monday, which she did and we were to take me to the ER in Charlotte.

Needless to say, that was a LONG day. I got another MRI (that's 3 now exactly a month apart) and I was given steroids to reduce the swelling in my brain.  It was an amazing transformation.  I went from barely able to put two words together to talking normally once I'd been given the steroids.  (On a side note, I also found out that I am allergic to an antibiotic levofloxacin.  I was accidentally given the levofloxacin instead of my seizure medicine.)

Mom, Dad and I went to Concord for my functional MRI on December 26.  That's the one where they are working to pinpoint specific areas of my brain controlling language, speech, and movement on my right side.  On December 27, Mom moved in with me.  I had almost fallen in the shower, my balance was off, and my motor skills with my right hand were nonexistent since the steroids that they had given my in the hospital were done.  Luckily, the next Monday, I had a previously schedule appointment with my primary care.  His checking up on me (checking in with all the specialists), adjusting when I take my medicine, and adding a steroid again has made a huge difference in my quality of life while I've been waiting for the next steps.

The brain tumor board met on January 8 where my case was discussed and the next round of appointments we set. Mom and I think that the neurologist I met with on January 15 really got the ball rolling because before that it looked like I'd be waiting until February.  Instead, I got a call on January 17 about my surgery date and time.  This has been an exhausting week. I met with my other neurosurgeon on Monday. The rearranged my appointment with the neuropsychologist for Tuesday morning. And then it was back to Charlotte at 6:30 a.m. on Wednesday for an MRI where the mapped the area they need for surgery.

On Friday, January 24, 2020, I checkin for surgery at 5:30 a.m.  I almost feel that I'm more positive than the doctors.  I don't know if they're used to people having unrealistic expectations or what?  I know to expect the unexpected. I know there will be changes.  I also know that Wilma is very different from Wilbur.  My theme song right is "Into the Unknown" from Frozen 2, it seems resonate with the situation right now.

I am asking for specific prayers for my medical team and the anesthesia team.  I know that my case is complicated because I didn't wake up in Utah the way the planned.  They are planning two surgeries because they plan to place an electrode grid and further map my brain to isolate the speech and motor functions.  But all of that will depend on my happens tomorrow.  I'm also asking for specific prayers that any brain swelling doesn't cause additional problems.  And please, please keep my family in your prayers.  In some ways I think this is harder on them than it is on me.

I also ask for prayers for my anxiety about my fur-child, Jasper. This sweet gray and white tuxedo cat has been an absolute lifesaver since he showed up on my front porch in a rain storm.  While on chemo, he gave to get out of bed everyday, even if that was all I accomplished all day.  I'm also convinced that he knew some was wrong from October.  He's never been a lap cat.  In October, he started climbing onto my chest and sleeping there purring the whole time. He's continued to do so and stands guard on me each night.

I read every note or comment and I appreciate every thought or prayer even if I don't remember to reply.

They say "Patience Is a Virtue"...

I've always thought patience wasn't a strong suit of mine.  In fact, I'm sure I'm very "impatient" more often than not.  But I'm learning.

The medical board met this week to discuss my case in Charlotte.  They had the results from my functional MRI on December 26 and since they didn't meet on New Years' Day, they had all the information at hand when they met; everything from Utah and Duke.  The current plan will involve an open resection where they input sensors in my brain and observe speech and language and motor functions before removing two-thirds of the tumor.  It's a longer process with a lot of moving parts that will take some time and planning (I think we all thought I'd be recovering from surgery by now) but this approach could make a big difference long term.  While we were on the phone with the doctor, I looked at Mom and said "I want to win the war, not just a single battle."

Thank goodness I have a wonderful primary physician who listens, will research options, and will call on my behalf if he thinks they're not prioritizing the way he thinks they should me.  A simple suggestion of splitting my seizure as long as the total dosage didn't change has made a HUGE difference this week.  (After probably helped with my patience on Wednesday when Dr. Stettler ran through the boards' recommendations.)

The main thing is that I will be meeting with a team of doctors (two neurosurgeons, a neurologist, a neuropsychologist, and who know who else) in the next couple of weeks.  It also sounds like I will be in the hospital for over a week or two.

Since I feel like a science experience, I'm keeping track of the differences I'm dealing with.  For instance, I'm becoming a Leftie.  My right hand has a case of the butterfingers.  Any advice on becoming a Leftie is encouraged!

I have also temporarily lost the ability to taste.  It's really weird, last weekend I managed to taste a pickle on a sandwich but nothing else. (NOT EVEN DIET SUNDROP)

Also, the right side of my body is a completely temperature.  Most people know I'm rarely cold but currently my right hand and right leg have their own ideas!

PS Please forgive the typos. It's a work in progess.