Not What I Expected

I had imagined all sorts of things...a horn like a rhino's that the kids could play nerf rings on. An upside-down kiddie pool with a water collection feature in the sagging middle. At least some jagged staples giving me a partial, really-mean looking sneer-shaped facelift. I was really looking for some respect on the playground. Can't you just hear the 5th grade boys someday soon when I come to get my kids from school (God willing)? Mrs. D. is SOOOOOOO cool! Sam, can I come play at your house so I can get a better look at your mom's freakish head? Do you think she is one the characters from the Lightening Thief?

After all, folks, I had BRAIN surgery today. Some impressive evidence of this would be nice.

Well, color me disappointed in this regard. All I have to show for having had a hole the size of a drinking straw drilled into my head and a catheter threaded deep into the recesses of my brain today is a sweet little white piece of gauze delicately edged in blood. BOOOOORRRING!

Well, at least I have a shiny new button for my purse that reads, "I had brain surgery. What's your excuse?". This cheers me greatly in the absence of all the above. Because, after all, brain surgery is a really big deal (if it wasn't, we wouldn't have all those "It doesn't take a brain surgeon..." jokes), right?

Ok, ok....enough joking around about something so very serious. To recap, this week alone I have had my spinal cord punctured, fluid removed and replaced with extremely toxic chemo (no anesthesia whatsoever); an egg beater placed (and turned on, mind you) in my femoral vein, a filter threaded with wire down a vein in my neck and attached somewhere in my abdomen) to catch the pieces of blood clot loosened by the egg beater before they reached my lungs (twilight anesthesia--don't fall for it, there is no such thing); fasted, even from water and ice chips, on a queasy stomach, for two days in a row until 6pm as I waited for my surgery; endured ridiculous tights that deflate and inflate on each leg to prevent more blood clots; had my skull opened up for the express purpose of being able to bathe my brain in more toxic chemicals (though, blessedly, far less toxic than the methotrexate from the spine, since this one is for the long haul), and had a rough breathing tube shoved down my throat when all I want to do is start singing again.

Now, this may seem like a giant complaint (and I admit it kinda' is!). But the truth is that I came dangerously close to death at least several times in this last month...giant undetected blood clot, near starvation/dehydration, measurable new growth, though happily not too much, of the cancer in the brain in just 3 weeks...but scariest of all, the beginnings of my belief that I could not endure any more. I didn't think I could accept feeling so sick for much longer and was losing my will to fight. My family and your prayers are what pulled me through. I felt your love and support in such a tangible way that it got me out of bed for my nightmare-procedure-of-the-day rather than rolling over and drifting back to sleep where nothing hurts. You all reminded me to continue praying for myself, too, and so many of you came to help me do just that. You made sure I saw a priest, was anointed, received the Blessed Sacrament nearly every day I was in the hospital. You continued to bring meals and send cards, my kids' football/cheer organization created and sold "Rebels With a Cause" rubber arm bands and special shirts to benefit our family, and put the boys at every level in pink socks for the whole month. I am so grateful to you all for helping me to keep the faith, literally.

Now here I am, likely going home tomorrow, with every expectation of some extended period of good quality of life. Now, I am a realist. I know my statistics, but I am not a number and intrathecal administration of Herceptin is showing great promise and is still very new. I am on the forefront (again) of what our new medications can do and how they can be used. My particular flavor of cancer HATES Herceptin and I can't wait to send it a message tomorrow: we are not messing around and we are not backing down. (oh, yeah,and we're MAD too!)

Please continue to pray for my healing but also that my faith and will stays strong because to feel that waiver, even a tiny bit, is the scariest thing of all.

With much love, hope and gratitude,
Suzanne