Note: it’s. 4:50 am. my trusty leak proof ice pack has fully soaked me in the middle of the night and my pain is just sharp enough to keep me up so why not crank the second half of this sucker out. I started it a few nights ago…I apologize for anything asenine I say, can you blame me? I mean c’mon, I got a mother f$&@-ing brain tumor!…
I’m laying in bed, it’s been 5 days since surgery. I’m happy to report I’m home from the hospital but unhappy to report that this recovery is a real bitch to get through. The sharp and throbbing pain through my head and neck has relented to a dull ache that, though keeping me half awake at all hours appears to be in the range of what most would termtolerable so I’m counting my blessings. The day after surgery in the hospital was a blur of me asking for pain meds and getting knocked out by them with intermittent but totally lame attempts by me to see the “great Dr. Spetzler” who apparently only goes to see any body according to his own whims and literally is able to examine you and assess that you are “looking great” with half of his body firmly planted in the hallway.. Though I can’t say I’m a fan of his attitude I am a fan of his work. I did not pick him got his genius conversation skills, the guy knows his way around a brain, and those teeth do sparkle like the end of an Orbits gum commercial. Though the days in the hospital are tough to differentiate they were each marked by notable moments.
Day one- the terror. Someone really should have warned me that you go into surgery prep alone. I had not hugged anyone long enough to be prepared to sit in a room with confusing cable on a TV that was too high to see. I had no idea if my gown was on right and between that, my nervousness induced IBS( oh shut up, we’re all grown ups here- you get brain surgery- see what a number it does on your bathroom habits….), and an actual attempt to find an escape from worlds most windy pre-surgical ward, I was a mess. A poopy, scared, quaking, bare assed excuse for a brave woman. I asked the doctor that came in, a delightful Chief Resident with a name I wish someone would have written down for me, a few important questions.
“Did you go to bed early enough?” I asked through a mumble of nervous laughs…
” I assure you I and, we all really, are quite rested and ready, and good at this.”
“Phew!” I replied, ” and um… Steady hands?”
He at this point was casually leaned forward on the table at my feet, his hands in a comfortable fist. He separated his hands momentarily then clasped them again. “Steady hands!” He said coolly. “Anything else?”
“Yea, on a scale from one to terrified how close to terrified should I be?”
“Look” he said, closing his binder, my binder, “this is probably the hardest surgery your body will ever have to go through, it wouldn’t make any sense for you not to be terrified. You’re going to do great, and again, you are in very capable hands.”
It was perhaps the perfect answer. He was honest, fully admitted what was about to happen sucked giant elephant balls but he was confident enough that he and the others could do it. Okay I thought as I leaned my head back on the pillow, I can’t escape now anyway, they got me all wired up to machines…the rest of the morning was peppered with my friends and family coming back three and four at a time breaking pretty much every rule of the pre surgical ward to say good bye. The last to leave we’re Jason and my brother. Two of my most ardent protectors. I knew as long as my big brother was in the room he’d watch over me like a hawk and the worse that would happen is he would get gloves stuck somewhere while making latex turkeys, when he finally left and I was passing out I realized, this is really freaking happening. Ugh. God. I didn’t even have a chance to utter a prayer, I was too busy planning my escape.
Fast forward about 8 or 9 hours and I am in a blur of red wires and people in blue talking. Bright blurs of white overtake my line of sight. My body is shaking violently and I hear someone yell,”we’ve got a really bad shaker we need more blankets here ASAP!” Then I felt the warmth of a blanket cover me over and over again as my body shook more fiercely than it ever has. The actual first thought to enter my head? “Ughhhh, Heaven feels awful! I didn’t know you could still get sick in Heaven and it looks just like the hospital.” I thought I had died, was cocky enough to think my forsaking, inability to form a coherent sentence to her God, fat ass had taken the express to Heaven, and I was ungrateful about it. Ha! Classic brain tumor moment…. Then it dawned on me. I’m not dead! I started clawing at my wires. One giving me oxygens as someone above me said, ” her 02 numbers are low, keep her on this.” There was a line in my clavicle area, little nodes all over my chest, two lines and a brace on my arm, some kind of extension cord connecting them all together and they were all attached to various beeping things, there was a cuff that automatically inflated every hour the hour to jar my Bp. There was not a single time it went on that I didn’t get surprised to see it.
Then the nurse got my new bionic chest covered enough to start allowing my family back. I don’t remember who came in what order but they had all stayed. Tried and true, patiently updating loved ones near and far. It was about 4 or 5 in the afternoon. I felt okay. I was shocked. I was a bit dazed. Finally it dawned on me to ask how it went. My dad was the best one to tell me because he was glowing, “it went great honey! Your nerves are great! They for most of it! Your nerves are all in tact, so great!” Okay so, hopefully they left Herbert nothing but his feet and his head so he can look down at them shamefully and think twice about what he’s done to me. So he’s not gone but the rat bastard isn’t killing me. Success! And I was blinking! With both eyes.
The first night was by all accounts the easiest. My mom stayed with me, and she is an excellent caregiver. I was still quite groggy so that and the ivs had me well knocked out. The most painful part? Watching the clock waiting for my sister Farrah to get off her plane and come see me.
Day two- holy crap you guys, this freaking hurts.
Day two started well enough, the family trickled in. Farrah made it and brought a Charlie Brown Christmas tree. My best friend who had come be by my side for surgery came and saw me (between playing go fish with my nephew) and it wasn’t until he started saying nice things as he hugged me goodbye that I realized I could not hear a damn thing out of my right ear. Wtf. I felt immense pressure in that side but no hearing. No words were getting through that Great Barrier Reef. I decided not to panic and like with all awful things, deny it is actually happening. Jason in a feat of actual romance, brought me the sweater he had been wearing the day before so I could sleep with it and that somehow seemed to be the nicest thing anyone had done for me in a long time. And that says a lot because people are super nice to you when you have a brain tumor. Just sayin. It meant a lot. Later that day Farrah and Tatyana, my stern but excellent nurse, helped me put real clothes on and like the family pet, newly minted, took me for my first walk. As I was walking down the hall, flanked on both sides by lovely women my mom was approaching in the distance. She hurried towards us with tears in her eyes exclaiming, “my baby is walking!” She clasped my head in her hands and kissed my face. In all this time my mom had held strong, never wavered, never showed an ounce of anythings but resolve towards my diagnoses, but here she showed the weight of it on her. She was just as devastated by what I was going through as I was. Her tears, wet and salty against my cheek were nothing compared to the joy she was expressing at that moment. The look in her eyes was stunning. Proving once again that my heart and hers are inexplicably and inextricably linked to one another. That her love was enough to see me through. It was one the week’s monumental moments. Hell, it was one of life’s monumental moments. (Please note here my unending desire to call it MOM umental, but it seems to detract from the sheer power of my love for my mom).
The rest of the hospital stay was a lot the same, the doctors seemed genuinely shocked that I couldn’t hear out of that ear. Apparently “hear what?” Is not the right answer to a doctor rubbing his fingers together next to your ear asking if you can hear it. But I couldn’t see his fingers and I couldn’t hear anything. I was discharged straight out of the icu after 2 days. The day I got home I carefully followed the instructions on my Percocet and woke up with my pain at a 10 out of 10. With my whole family gathered at the door of the bedroom I am calling mine here in AZ they called the on call doctor for advice debating quietly if I could even stand the ride back to the hospital. That night was horrifying. Farrah slept next to bed on the floor as not to jostle me and Jason came in every 3 or so hours to check on me. It was genuinely sweet and their love is truly heartwarming. The night still sucked though. As did the next day, as have the ones after that.
I am now seven days out from surgery. There is a crazy loud sound in my ear. It alternates between various tinny noises like electronic chirping crickets. The louder the noise around me the louder my ear noise. The pressure too seems loud and turns out, from my failed attempts as using a bobby pin that my head is still numb. My head aches in more than just the cut zone, as they screwed my head into a vice to keep me still and apparently could find no better place than the center of my forehead for one of their screws and I feel at least 2 swollen spots under my hair that appear to be the product of the same culprits handy work. The surgeons did a lively job leaving my hair mostly in tact. My mouth tastes like what I imagine to be the taste of the icu floor. Overly sweetened apple juice covered in steel. The taste will not go away. I chew a lot of gum to both rid me of that and help my facial nerve tell up from down and good from bad. I have a lot of pain, I am afraid to sneeze, cough or poop, in general. The dizziness and nausea have been most crippling but I am, as of yesterday determined to defeat them. Now that I am on Advil over Percocet my impetus to give up (which was pretty strong) has been slowly replaced by one to survive. Though I’ve already thought about ways to avoid hospital visits ever again. Even for kids. There has to be a better way. I do bust into spontaneous tears every once in a while but have decided to forgive myself for it and sometimes I even feel funny again. I see my siblings and nieces and nephews goofing off around me and I can still laugh. Brayden and Suesie are protecting me and when dad or Jason is tired, Brayden is always up to walk me. He’s the leader.
Jason encouraged me to write again. I’d pretty mush lost all will to do anything accept watch The Office on Netflix but it wasn’t until he whispered to me about writing that I realized it would be my saving grace. Underneath this shell of a weird, awkward, weak, woman forced to wear knit hats to cover her scars to the world is the beautiful gazelle of a woman I was before (yes I was a gazelle – fast and tall is my self image? No???). Writing, knowing at least how to say some of what is happening let’s me know I’m still in here. Having a way to phrase things that makes them sound more palatable, less awful, maybe even funny lets me know I’m still under here. I haven’t felt very womanly this whole time, not really beautiful or smart, not even witty but I know I’m under here somewhere. Herbert didn’t take me over. I’m still here. And even though it sucks ass and really hurts like hell and is likely the scariest, hardest 7 days of life I’ve ever passed or will have to fight with my body, I’m here and I cannot upgrade this body for a newer model just yet so I’m going to figure this out. This is it, my fight. Thanks for standing behind me.
Peace and love-