Pray for proteins!

A few days ago, when I was trying to explain this week to someone else, it occurred to me that the truth is this: we usually live month to month, scan to scan. When we get news like we got last week, we have to adjust and live day by day. Once I go to check in for surgery and through the end of my hospital stay, we will be living hour by hour. I think this is the absolute best way to describe it. One day, one hour, one minute at a time. Anything can change at any moment. Yesterday's appointment with the surgeon serves as testament.

When I wrote my last post, I had some things wrong simply because I didn't have all of the information. This post is to correct those details. First, I said that only one spot glowed on the PET scan but actually, seeing it from a different angle suggested that both spots were potentially problem areas. Since my brilliant surgeon is going to be in there anyway, it's best if he just takes both spots out at once. He said he wants to be as aggressive as possible and I agreed. Second, I said that I wouldn't lose vision because we thought that the only problem area was in the anterior (front) of the original resection cavity (the hole that remains from the previous surgeries), however, the other spot that will be removed is in the posterior (back) of the resection cavity, and is attached at the occipital lobe (the visual processing area). After digesting this for a while, thinking that this means more visual loss, Jason pointed out what the neuroopthamologist had said and that she could have been wrong. Let me explain because it took me a bit to understand what he was trying to say (I was a bit overwhelmed at the time he was first telling me but now I've fully digested it). 

The neuroopthamologist said that my vision was worse and would continue to worsen because the eye cells were dying off. She gave us a print out from several months ago coupled with one from last week of what I am missing on the left for each eye. They were markedly different, meaning that I'm seeing less in the left visual field now than I was several months ago. I guess I was being the lazy because I didn't really study the print outs. Jason, on the other hand, studied them closely apparently. When we saw the location of spot #2 yesterday, it occurred to him that the neuroopthamologist could be incorrect and that the continued loss of vision on the left could be due to the tumor being attached to the right occipital lobe (the area where this vision would be processed). So, while I was internally freaking out about losing more vision, he was realizing that I don't have that much vision on the left to lose anyway. Once he showed me those print outs last night and I saw that I'm pretty much completely blind on the left already (I mean completely, seriously), I don't think I"m even going to notice much difference. Today when I go for my pre-op appointments I will drop off a copy of those and leave them for the doctor because that will give him a better idea of exactly how aggressive he can be when he cuts it out.

Now for spot #1. When I saw where that location was last week during the oncology appointment, I was definitely nervous because it looked like it was backing up to the right frontal lobe. My neuro and psych friends know what that means, but let me give a short synopsis so that others understand. The frontal lobes process decision making, executive functions, and other high level thought. It is also the "personality" area as well as the impulse control (i.e., the brakes on impulsive behavior). After the oncology appointment, I started to worry that I could become a different person and I told Jason, "Please don't let me join the circus!" He nervously responded with, "You are not generally a person who can be told what to do. I'd have to physically restrain you." My secondary concern about this spot was that after surgery #2 I was told they couldn't be all that aggressive in that area because of a blood vessel they didn't want to get too close to. At the surgeon appointment, he reassured me that the blood vessel was not an issue and that the spot is actually not close to the frontal lobe and doesn't seem to be trending in that direction. I made the surgeon and the nurse a little uncomfortable by saying, "Oh, I'm so glad! I was so scared I was going to become a stripper! I don't want to be a stripper!" I'm wondering if they didn't get my humor at first because once I said that I was concerned that I would run off with the circus and that my husband would have to confiscate my credit cards, they became a little more relaxed and even laughed a little. Those who have studied the case of Phineas Gage know how his frontal lobe damage turned him into a completely different person and understand that these are real fears when discussing frontal lobe surgery. Luckily, my concerns appear to be unfounded.

The only other differences from the first two surgeries are that, at my request, they will lower the dose and duration of the steroids this time and the stitches will stay in a little longer because healing takes longer on surgery #3 apparently. When the surgeon finished with us and left the room, Jason said to me in front of the nurse, "I forgot to ask him to take out the grumpiness." I reminded him that this was discussed at the first surgery and we were told that not only could they not take out extra things, they couldn't add anything either. Then I said, "If you want them to take out my grumpiness, he could just remove you and all would be fixed." Today we go for a long day of pre-op appointments, some of my girls are coming from Austin, and we continue to live day by day, hour by hour.

One more thing. Lots of people offer prayer, hope, juju, good vibes, and other various forms of positivity sent up to the universe on my behalf. We do appreciate that more than you know. I was always taught to not "pray for stuff" and to "pray for the knowledge of his will and the power to carry that out." Well, I'm going to ask you, if you are a person who prays, to pray for something in particular: Proteins, markers, or something to target. Let me briefly explain. Cancer cells sometimes have protein molecules that "stick out" of the cell membrane as well as other markers that oncology drugs can target, meaning the drugs can use these to identify and kill cancer cells by finding these markers. My tumors have none. In fact, my oncologist has called it, "The most boring tumor ever" on a few occasions. However, when undergoing chemo and radiation, the cells are damaged and when damaged, cancer cells sometimes can "fix" themselves and continue to survive. The cells that survive sometimes come back different with different proteins and markers than they originally had before they healed themselves from damage caused by treatment. The "stuff" I'm asking you to pray for is that when the tissue is extracted and then analyzed, it would be really good if these cells that survived have enough proteins sticking out of them to be recognized as cancer cells by existing or new treatments. I'd really appreciate that. Lastly, I really appreciate everyone on the side lines and the frontlines who have always supported me. Much love to all of you!