WARNING: DO NOT PROCEED IF YOU DON'T WANT TO SEE ME IN THE GAMMA KNIFE FRAME!!!
It has been two weeks since the gamma knife and I am starting to feel more or less normal, but with a little wear and tear.
Overall, the procedure was not terrible. To my surprise, I was not knocked out for the placement of the frame. I almost panicked when I saw the dental-style chair awaiting me with the frame screws carefully laid out alongside it and nothing between it and my skull other than four shots of lidocaine in the four locations where the screws were headed.
Soon, my fears were calmed by a fast-acting milligram of Ativan and I was able to relax a little. Not enough to fail to notice the pain of the injections or ignore the eerie sensation of my skull becoming numb. Just like when the dentist numbs your lip and you experience a subsequent sensation of the numb part of your face being huge, so happened with my skull. My head felt like a giant, hard helmet to the touch. After the shots were in, though, I felt no pain.
Immediately after the frame was in place, I was measured in a fish bowl-like structure that made me look like an alien.
Don't ask me why I'm smiling in all of these pictures...must be an effect of all the brain radiation I've had, because there is really no other explanation beyond the fact that I got to sleep a lot that day and spend the whole day more or less alone (meaning without kids) with my husband, which rarely happens. We always have fun together, no matter what we are doing. Even this.
After my first MRI in the frame I had some time while they planned and programmed the radiation I was to receive later. I used that time to eat as I was not allowed to eat before the placement of the frame. It seemed like a good idea until I actually tried to get food into my mouth with the frame on. It is hard to see it in the photo above, but there was not enough room between the bottom of the frame and my mouth to drink without a contorted straw nor eat without using my fingers to shove tiny bites of food into my mouth which could not open far enough to receive them given the base of frame at my chin which blocked my jaw. Judging by Jay's reaction, it was quite amusing. I don't believe I was smiling quite so much at that point. Thankfully, there are no pictures of that to share.
After being inserted into a machine that looked like a giant hair dryer at the salon with tiny holes all around it, only metal and horizontal, and having my frame locked into the table, I promptly fell asleep. Clearly I have quite of bit of experience with being strapped to tables and being put into tiny spaces. It not only doesn't rattle me, but it is some of the best sleep I ever get. So, I really don't know how long it took, but I don't remember hearing any noise (unlike the MRI which puts me to sleep with its loud, rhythmic thumping) and I was surprised when I woke up that it was over so soon.
After that, they disconnected me, gave me some decadron to control the swelling in the brain and some antiseizure medicine as a precaucion and sent me on my way looking more or less like Chris Everett. But where is my racket?
For the first few days I felt surprisingly well. I soon realized, as I crashed into exhaustion and cloudiness for a few days after that, that it must have been from the decadron (a steroid which I really don't care for because it makes me eat uncontrollably...recall 2011 when I gained 38 pounds in 6 weeks while taking it through my whole brain radiation).
Happily, I am mostly back to my version of normal with only two little exceptions, which my doctor assures me are temporary. First, my ears have been plugged up to some degree constantly since a few days after the treatment. I thought it was a minor cold, as a few of my family members have nasty coughs right now, but was mystified when I failed to clear them with the "scuba diver" technique of plugging the nose and blowing, and even real Sudafed would not open them up. My doctor told me it was very possibly a result of minor swelling in the brain that simply pushed them out a little and that over time they will open up. As a singer, this is very disconcerting to me. However, it does bring along the benefit of dulling the noise of seven active children, so I may go into shock when they eventually clear.
The other minor effect is almost fun. When I move the skin around the scab on my left forehead. it feels like the top of my head is wiggling instead. Some weird nerve thing I guess. Very low on my totem pole.
So, now we wait. Four more weeks until I will have the MRI which will give us some preliminary information as to whether or not this worked. My doctors are confident that it has and I share that optimism.
Now, once again, we are slowly climbing up the roller coaster track. Here's hoping for less height and more level track going forward!
Monday, February 03, 2014
For a very long time I have been enjoying a period of only minor irritations resulting from my ongoing treatment. There has been a brain tumor, if you have been following along, that has grown slightly over several MRIs but not enough to be a concern. Recently, it has grown more substantially and has snuck up to 13mm. Therefore, it is time to do something about it.
I am still feeling pretty well and am nearly clear systemically, but am struggling a bit with short-term memory issues and balance due to the location of this particular tumor. My wonderful oncologist referred me to a neuro oncologist who took his time reviewing all my previous brain scans and radiation records to decide what the best thing is to do. As I have already had a decent amount of radiation to my brain and am doing so well in the rest of my body, the doctors are being extremely careful to ensure my long term health while attacking the tumor effectively. I am so blessed to have the care I have.
The net-net of all this is that I will be having a procedure on Friday called the Gamma Knife. This is a high dose of radiation that is extremely accurate--sub-milimeter, in fact. And how do they get that kind of accuracy, you might ask. Of course, I am happy to tell you.
I am going to be the lucky wearer of a titanium frame that will be fixed to my skull, under the skin, with large screws. Medieval, don't you think? This image is not for the faint hearted so I won't put it directly on the blog, but if you want to see what I will look like on Friday, click here.
Of course, I plan to wear it MUCH better than that dear gentleman (although I admit that he looks quite stoic). I have plans to adorn it with ribbons, bows and maybe even a decorative bird's nest. If I have to sport that thing all day, I must make it mine!
Ok, not really. But this is how I entertain myself while awaiting a procedure such as this. Why not have some fun with it?
At any rate, aside from being restricted from driving for a few days (just in case I have any seizures, but highly unlikely) and spending a few days substantially fatigued, I shouldn't experience much in the way of side effects from this and will likely be back to myself within the week. Let's hope we can avoid killing any more brain cells than necessary because goodness knows I need every one I have left!
Mostly, I am just grateful that I am still at a point where something can be done about it and that I have such a great medical team. Thank you all for your continued prayers, they are really what is getting me through all this with such a peaceful heart.
On another, yet completely related note, Don Alvaro del Portillo will be beatified in Madrid on September 27th. As many of you know, I have been praying for his intercession in this matter since day one and believe he has helped me greatly in beating the odds thus far. God willing, I will be attending the ceremony in Madrid with some friends from LA.
Thank you again for supporting and following me and my family. Here's hoping I have the energy to post a successful post-report over the weekend!