Hello Peeps
Gosh, I'm sorry that I have been so neglectful of this fabulous blog that my dear sweet niece Meghan started for me. I know that you all understand and no one holds any ill will towards my delayed update, but I do feel a bit guilty (and so do Lauren and Erin). Y'all have been so incredibly kind, loving, supportive, encouraging, concerned, interested, and wonderful, and I feel bad having kept you "in the dark" till now. I'll try to give a brief recap of what's happened in the last two weeks, and fill you in on my appointment this morning with my radiation oncologist.
So, holy moly, I cannot believe I am two weeks post-op. Each day, I think, gets better. The good days prolly find me doin' a little too much, which usually puts me on an "off-day" the next. Ok, duly noted. Take each day e.a.s.y.
Surgery went really pretty well. From what I understand, it took a little longer than my fabulous neurosurgeon Dr. Hemley anticipated, and she was not able to remove all of the tumor. Turns out the silly thing was shaped all goofy. I went into surgery not the least concerned about what she was takin' away, as I had already determined that it was simply a pocket of intelligence overload that just had no place else to go. Apparently, though, I believe that was one of my first questions in recovery, was "Did she get it all?" And, I will admit, knowing that she didn't left me laying in the bed with thoughts of nasty tumor, left to its own devices, layin around my brain just kinda hungrily and selfishly and loudly and rudely makkin' away on my healthy brain. Kinda messes with you.
Anyway, after stellar recovery post-op, that included wonderful interaction with some pretty incredible nurses, OT's, PT's, etc. I came home on Friday. Lauren brought me home and we were greeted in the driveway by Erin and my bruther Jimmy, who insisted I shut my eyes for the trip in through the front door. People are funny, makin brain surgery patients walk with their eyes closed. Hehe. Balloons and flowers and a welcome home banner and a nice clean house provided my warm welcome. It felt really good.
To bed I went. Saturday was my worst day post-op for a couple of different reasons. I had some very special visitors (Pete, Liane and Jammerz from Denver!) who I barely got to visit with, but we'll make up for it. I got thru Saturday, Sunday was a bit better, and on Monday I felt like I turned a corner. Each day since has had ups and downs, as my strength and stamina see gains. I've been on steroids and omigosh my appetited has been voracious. I weighed 122 two weeks ago; today I was 130! I've been eating everything that's not anchored down.
On Tuesday post-op, Karal arrived from California just in time to go with us to my PET scan. It was a cold rainy day, which is my favorite. As I lay on the table, I practiced alot of visual imagery of the little guys coursing though my body searching for "hot spots." I kept saying "Nothing to see here...move along...I appreciate you searching, but there's nothing to find..." and I imagined little guys looking for bad stuff, along my bones and under and behind my organs, giving the "all clear" after searching each area. As soon as the scan was done, we chilled in front of the fire and just appreciated the day.
On Wednesday, my neurosurgeon's office called to tell my my scan was NEGATIVE. Sounds cliche, but I swear, there are NO words to describe how that felt. Immense relief, gratitude, the ability to take a deep breath and exhale....That phone call totally removed the trepidation and fear I felt regarding my upcoming appointment with Dr. King, my wonderful radiation oncologist. I felt I would not be walking in there to see him with any possibility of hearing any bad news, and that felt incredible.
But, as I suspect each of us knows, cancer is a pretty hideous thing. You can think you have a plan, you can think you know it all, you can think you've got a handle on it, and it just frickin takes delight in laughin in your face, chewin up and spittin out plans, and does what the crap it wants. While Dr. King is encouraged by my clear scan, he did have a bit of bad news. There is a tumor on my brain stem that we had not seen before. So, that, coupled with the fact that cancer cells were left behind in surgery, has led to Dr. King's plan for whole-brain radiation, as opposed to just radiating the tumor bed. I will see him again on Thursday for our planning appointment, at which time my mask will be made, all other details will be finalized, and I will begin 20 straight visits I think on Monday. I am not anticipating a "rough-go" of it....he anticipates no nausea - just fatigue, maybe some short-term memory loss, and of course, my crazy hair will fall out 2 1/2 weeks after my first treatment. I was relieved to hear I will keep my eyelashes, as that was one of my least favorite things last time. I totally looked and felt like Uncle Fester. I don't feel like I'm too worried about losing my hair this time, as its been proven that it does come back, and it will again. It'll be a cold winter, but I'll rock the bald look proudly. No biggie.
After my radiation treatments are done, we will scan and make sure the tumor bed has no cancer cells hangin around there, and that other tumor is gonnnne. I told Dr. King that he has met who will turn out to be his most boring patient ever. Get in, fry my brain, get out, clear scan, done deal. I know I conceded above that cancer has its own plans, but truly, this is what I'm expecting, and its EXACTLY what happened when I went thru it before. And, I mean shoot, I'ma go ahead and make my plans too, so that this beast knows its not the bossa' ME. Forever afterwards, I will have an MRI every three months. Not a big deal, other than I will have to provide St. Mary's Imaging with Hootie and the Blowfish CD's for my listening pleasure. :o) I was lucky enough to have the same Rad Tech for each MRI I've had so far, who took my feigned and over-dramatic reaction to them not having any Hootie in great stride. For my last scan, he had one Darius Rucker song queued up to play over and over, bless his heart.
So, that's what I know right now. I do have lots more to say but I swear I'm paranoid that I'll push a wrong button and lose this, so I'll post for now, and update more! Before I go, though, I want each of you to know how very much I appreciate your love for me, and for my kids, I really do. It makes me cry. I feel SO incredibly lucky and grateful to be the recipient of SO.MUCH.LOVE. It truly does make a difference, it truly does help, it truly does make me feel very lucky. Very lucky. I cannot imagine how it would feel to have to go through stuff like this without the love and support I have been so privileged to receive.
So, thank you. Thanks for being by my side and letting me know, unabashedly. Know that I love you, and I appreciate you, and I am sincerely grateful to have you in my life. Even somebody with tit for brains knows that that makes me a very lucky soul.
Love you, and I'll update again soon, I promise.
