More Ramblings From a Broken Brain

Getting an IVC infusion

Saturday, March 20th, 2021

It’s been a hard day. It started with a misunderstanding between Andrew and me which was quickly resolved, but always painful. We fight passionately, so neither of us were fully recovered when we drove to our happy place, the “Friendly Fox Cafe.” Looking out the window at the bland terrain, we had 12 minutes to mend and ended with a sweet reconciliation. Upon arrival at “The Friendly,” we ordered two coffees with heavy cream, one jasmine green tea, and brisket on a bed of arugula with aioli and jalapeño cream cheese. It is a quaint, charming cafe in the 07–a favorite, historic zip code here in Fort Wayne, Indiana. We made a pact to go every Saturday morning. It’s our new church (minus the guilt and judgment that frequently come with religion).

My hair is growing out from the surgery. I am having a difficult time hiding it and it looks silly. I know this is sheer vanity, but sadly I am quite vain. I’ve been wearing my hair swirled into a bun on top of my head—not so much a messy bun but kind of like a top-knot. I often use a scarf to hide the eleven inches of 3-inch regrowth that sticks out regardless whether I wear my hair up or down. It looks like a mischievous toddler took scissors to my hair. It’s a trivial complaint, in light of the gravity of my situation.

There are no houses available.  We toured three this week.  One was too tiny, one was too big, and the last one was too awkward.  Ugh.

Wednesday, April 7, 2021

I’m sitting on my daughter’s bedroom floor typing while my mom sits at our dining room table working.  She just took a phone call and has a thunderous phone voice so it’s as if she is right next to me unintentionally crashing into my thoughts like a bolt of lightening.  She wasn’t talking when I sat down to write.  It’s a tad distracting.  She owns her own small business and fields calls all day long. She has a pure heart and means no harm, just so we are all clear about that…

We found a house in Fort Wayne!  It’s my dream house.  The kitchen is a larger version of our Minneapolis Tudor’s.  It has the white subway tile and its cabinets are painted the same slate blue that I adore. It’s a ranch:  perfect for empty-nesters!  And, it’s filled with light—windows galore!  I cannot wait to move in. 

I have been having intravenous vitamin C daily.   It is exhausting.  This is my 8th day, and I am doing 10 infusions total.  My MRI is on Monday, the 12th  of April.  I will head straight to the clinic following the scan to have my final infusion.  Apparently, the IVC will help to rid my body of the gadolinium (a metal they use to highlight aggressive tumors).  I have not researched these findings for myself, but I do trust Professor Michael the purveyor of this information, and I know that a little extra vitamin C cannot hurt, only benefit.

Thursday, April 8, 2021

Andrew is back in ”The Fort” this week thus the reason my mom came to stay with me.  I am not an epileptic, but I do have brain tumor induced epilepsy, so there is always a concern that I will have a seizure. I stay in Makaela’s bedroom when Andrew is gone.  It is on the main floor across from Samantha’s bedroom where my mom sleeps (I miss my littles).  I get up to use the bathroom on average of two times per night, and need to descend the stairs to do so, so it’s better when Andrew is gone that I’m somewhere where someone can hear me in case I do get unlucky. 

I have had a consistent stomachache for about a week now, maybe more.  I haven’t paid much attention to it, but I don’t have much of an appetite.  I make a porridge daily that is primarily made up of powdered supplements along with various seeds and nuts.  It’s nutrition packed with many components that have synergistic affects with the IVC.  The last two days I have not eaten before my IVC  appointment at 1 pm, but, I may eat it today to see if it helps with the IVC jitters. 

Friday, April 9, 2021

Wow.  I had a terrible night last night.  I was certain at one point that my tumor had metastasized to my abdomen.  I looked 4 months pregnant, and have for the last couple of weeks.  I have tried eating less and shortening my “feeding time” to four hours (from 1-5).  I walk after every meal, take epsom salt baths, do strength training, dance, jump on my rebounder, and I still look pregnant.  I “googled” glioblastoma and ascites.  Never google health scenarios in the evening when your partner is out of town.

As I was panicking, I wrote Andrew an e-mail as to not awaken him with a text or call (he is in the eastern time zone) asking if he could fly home ASAP as I was scared and I felt all I needed was his presence and to be held. In hidden and not-so-hidden desperation I went across the hall to my mom’s room where she was sitting on the edge of her bed working on her laptop.  I showed her my distended belly and asked her what she thought.  She said, “it could be menopause.”  I told her my period stopped about three years ago, but, she explained menopause goes on for about 10 years.  Great, the joys of being female. 

I was wearing a charcoal patch across my bloated belly, and then she added two more for me:  one over my liver and one on my back.  I decided also to not take the magnesium pill and some other stuff…and went to bed with a hot charcoal poultice over my eyes.  It’s nice having a mom.  When I woke this morning there was a sweet video of our new home that Andrew texted to me this morning, and my tummy was three-quarters flatter! I have decided to take a break from my porridge and multitude of supplements and just take the anti-seizure medications until I have my MRI on Monday.

The scary thing I read was from a medical journal about a 15-year-old girl who had the exact same original brain tumor like me that had progressed to a glioblastoma (like me) and then spread to her abdomen (like me?). It happens in .2% of people with secondary glioblastomas. I had an anxiety attack. It hurt to breathe. I imagined the ascites filling up my chest with fluid and stopping my heart. I am not afraid of dying, but I just love being a part of my family and do not want to leave them until I am good and old. I want to read Samantha’s writings and listen to Makaela’s music making and grow old with my best friend. I am determined to live and figure out how to cure my cancer. The oncologists are not helping, so I will do it myself!

“It always seems impossible until it’s done.” ~Nelson Mandela

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