Fact: It's pretty much a sin to ask for any other brand of ketchup in Pittsburgh, Pennsylvania, besides Heinz ketchup. My best friend Katy jokingly asked the Uber driver (who was in the process of telling us the Heinz story) "what if I ask for Hunt's ketchup instead?" The driver looked at us seriously in the rearview mirror and said, "don't do that."
I used this fun fact as a conversation starter with the MRI technician today. She leaned in close to my face (which at the time was in a contraption resembling a Hannibal Lecter mask) and whispered as though she were confessing, "I like Hunt's better. I know it's wrong, but I do."
It feels surreal to be here...kind of like walking around in a dream. Last night I stared at Katy as she was lying on her bed and said, "I kind of want to pretend that this is one of our vacations." She and I have traveled so often together, that we know one another's rhythms perfectly...in the early stages of a friendship, you have to learn all the basic things when traveling together-managing shower schedules, the right amount of talking/alone/quiet time, dresser and closet divvying, who gets what bed, eating plans etc. After 16 years, we have a familiar and comfortable rhythm and I am maybe now more aware of it than ever...because it is just so easy to be around her. My needs are markedly different this trip, but the rhythm isn't altered.
I need her to do a lot I can't do right now...pick up anything I drop, help me carry things, walk more slowly, go talk to people for me. I've also asked the impossible of her, which she has mastered with aplomb... to find that perfect balance of when I need humor and distraction, and when I just need to be quiet and pensive. Somehow she has it down so well and it is so so refreshing to laugh through the pain. At this point, and especially accelerated in the last two weeks, is the physical pain. Pain and I are old friends, but it's bringing something new to the table when it hits on all the physical fronts. My head hurts all the time. All the time. And there is nothing I can do about it but pray and try to distract from it. It is indicated not to take any kind of medication the two weeks prior to surgery. My eyesight is impacted.
Tonight I tried to eat a piece of California roll, and saw three of them in my vision field. In my attempt to eat the real one, I accidentally bit the mirage instead, and soy sauce dripped down my nightgown. It was a pretty funny sight, and finding the humor in the situation when pain is bullying your life, is really one of the best medicines.
Everything hurts- my legs, my body, my eyes. Right before a seizure, I feel like it must be similar to what an acid trip feels like. Katy quips comments to me like, "if you fall, try to hit the floor okay?" so I will laugh. And laugh, I do. It's difficult to eat food, but I am trying to eat an abundance these last couple days because I won't be eating anything solid for the next two weeks. Since I feel out of control...I find myself trying to seek power in small meaningless ways.
Katy is a very easy going person, and she knows me well enough to know that...when I'm emphatic about putting the ginger into the soy sauce...she might say something logical like, "huh, you put it in the soy sauce? I've always thought it was for eating separately to cleanse your palette between the different types of sushis." Then, I might give her a withering look...because I am annoyed that she is right and that I still want my way. She doesn't physically roll her eyes and laugh at me, but I know she might secretly be doing so in her head.
Katy raises an eyebrow at me with a half smile and drops the ginger into the soy sauce. Suddenly, I am at ease and I lean back on my bed contented and relaxed. It is so dumb. You guys, it is so dumb. But I needed control over something in my world, and today it had to be ginger. But these are the little moments of true love. These are the small and seemingly insignificant ways we lay down our own desires, wishes, and let go (even when we are the one who is right) because we know we can make the other person happy just by something as dumb as ginger placement.
In the last couple weeks before I left Anchorage, I quintupled my socializing schedule and tried to see so many people who are dear to me and whom I love. But I am naturally quite introverted---and usually spend a great deal of time alone and in quiet. When I don't get that necessary recharge time, I find myself irritable and easily annoyed. Coupled with poor sleep this week, I haven't felt much like my normal self, just really grumpy. There were so many nurses and doctors to talk to today. They all wanted to talk about Alaska.
I had a lot of tests today- get undressed, get dressed, get into a gown, get dressed, get into this different gown, this contrast will make you really hot and make you feel like you are urinating, this contrast will make you feel really cold and uncomfortable...I tried to mentally go to a place of gratitude and thankfulness for access to this medical care, but I finally felt anger today. Anger that I was in Pittsburgh, anger that I can't bend down, anger that people want to talk about Alaska and all I want to do it try to figure out what to do with the massive thought I keep perseverating on...that life as I know it might end or be permanently altered in two days. Before this week, I could push all of this out of my mind, or tell myself what I have been telling other people---that you can't emotionally account for the varied surgical outcomes. I think that's a true statement, for awhile. But now that it is staring me in the face, I feel impelled to think about it. I have been ruminating on it- What if I die? What if I have a stroke? What if I am paralyzed or lose my eye? What if I have cognitive deficits that change how I think and act?
On the deepest level I feel peace. However, it's the lack of control I have (to actually control anything that happens on Friday) that is difficult to wrap my mind around. I think, for the most part, I've made peace with uncertainty. "Thy Will Be Done," is the truest and most sincere prayer of my heart. However, being a planner and slight control freak sometimes, doesn't make these last preparation days easy...God doesn't stretch us in the ways we are already Gumbyesque, God pulls us where we are wound like taut rubber bands. Speaking of God...I had a beautiful experience today between medical procedures. I made my way to the 11th floor chapel and was delighted to plop myself in front of the tabernacle, and just to sit in quiet prayer for a couple hours. That was very restorative and calming. I'll try to head back there on Thursday for awhile as well.
Tomorrow, I am calling Dr. Garner's office to find out what the MRI result is. I am curious to know if Cordelia has grown at all. Also, I don't know what time my surgery is going to be on Friday. Evidently, they schedule the time the day prior. I meet with Dr. Gardner at 2pm EST on Thursday, so I will know after that when I will be back on Friday. These surgeries last from 4-16 hours...depending on what they find. My tumor is on the basilar artery, so I imagine it might take a little more time to remove.
Also, guys...just now, while I was writing this, I realized I should probably shave my nose hair! Oh my gosh, is that a thing? Wait, no. That won't work. Nair? Depilatory? How do you even do that? Trim it for sure...but if Dr. Gardner is going to operate in my nose, it shouldn't be hairy right? I mean...I'd shave my legs if this was leg surgery. I need to Google how to best remove nose hair. And so I'll leave you here, because I obviously have something important to accomplish tonight!