More from over two years ago. These are the first two blogs I wrote after coming home from the first brain surgery (October 10 & 11, 2009):
SATURDAY, OCTOBER 10, 2009 2:47 PM, EDT
It has been a day since I decided to come home to continue my healing. One thing clear to me is that I am still a PATIENT. The familiarity of my surroundings at home encourages me to get back on my horse, doing normal things like filling Noah's water dish or answering the door. In reality, even simple tasks like this are difficult.
Last night I went straight to the couch, ate a plate of roast chicken MJ made for me, watched "The Office", then went to bed with a a pain pill. I woke up at 4am, disoriented, and needed another pill for my splitting headache. At 5am (my usual waking time where I use the morning hours for seeing after Noah's morning routine, composing, and relaxing with a crossword puzzle) I was encouraged to keep dozing in bed while MJ took care of Noah.
I got up at 7:30am and used all my power to get down the stairs and lay flat on the couch. Having switched to oral medications (which are weaker and less responsive than intravenous) I feel achy and also like I have received one heck of a punch in the nose (the entry site for getting to the tumor). I feel like Mike Tyson, only without the tax issues. Actually, scratch that; I feel like Mike Tyson.
As I lay on the couch, MJ brought me hot ginger tea and a cold glass of authentic apple cider. After five days of sickly sweet hospital apple juice, this was more welcome than you can know.
I have spent a quiet morning and afternoon reading and catching up, but other things will have to wait. A pile of mail sits unopened on the stairway going down to my desk. I won't worry about leaving it that way for a few more days.
I did the entire Wall Street Journal crossword puzzle in one sitting, and it was while doing this that I noticed my eyesight was better. Even though I still have dimness and color loss in my left (dominant) eye, I was able to read the print clearly. Most importantly, the "depth of field" was coming back. I held the paper at various distances from my eyes and I could focus on the words. Previously, I could only find one fixed distance from my left eye where things were in focus.
The pathology came back on my tumor but it is even more confusing now. We do know it was a tumor, but it was not a traditional pituitary tumor. It grew right next to the pituitary gland and crushed it (making it look like a regular pituitary tumor) but it did not originate from it. Comprised instead of "dead ghost cells" around which a cyst or cysts were forming, I know my case is now being sent around the country to people who study atypical tumors like mine. Complicating this, the spinal cord leakage was adding another veil to the case. Once again, my medical issues place me in the 1% of cases that don't fall conveniently into a single category. The good news is in all likelihood my pituitary gland will be able to spring back without a lifetime of hormone replacement therapy. This is very appealing, but I still want to know just what the heck it was in the first place.
So, things are getting better. But I still feel awfully dizzy every time I stand up, and I am still supposed to spend the majority of my time in a horizontal position. I'll probably watch a movie this afternoon and sleep some more. There is no replacement for solid stress-free rest.
SUNDAY, OCTOBER 11, 2009 9:54 AM, EDT
Sunday morning. One way I can judge the past week is how fast Sunday has rolled around again. All Sundays have special pacing. For me, it's the extra time in the morning with the paper, a larger breakfast, and (in the Fall) the Detroit Lions games. It seems way too soon for another Sunday to be here already.
Last Sunday was my final day before surgery. I was nervous and also in denial about what I might be up against. I tried to make it as normal a day as I could. MJ and I watched the Lions lose another game and she made me a special old favorite: bone-in pork chops and macaroni and cheese, her father's recipe. I was not feeling very well all day. I had terrible headaches, deafening ringing in my ears, and my vision was so disorienting I could barely read or use my eating utensils without dropping food.
What followed the next six days was a blur I am still sifting through. It is all just images now, popping back in my head randomly yet with clarity. I am trying to remember when certain things happened. My memory has always been good, and as I continue to rehabilitate at home I'll have a lot of time to reflect on what happened last week.
Monday night, after the surgery, is coming back. This was one of the worst nights of my life. I remember being wheeled into a bright room filled with advanced equipment. Already feeling the effects of drugs designed to calm me down, I carefully hopped across onto an operating table. The anesthesiologist handed me a breathing mask and told me it was just oxygen and to breath deeply. I did, and continued to look at the computer monitors and bright lights overhead. Soon, my lower jaw would not move. After another breath I felt extreme pain. I opened my eyes and found myself in a different room. I screamed and someone injected something in my IV.
"Is the surgery over?" I asked.
"I'm so thirsty. Can I have a sip of water?" A straw was put at my lips and I sucked. The pain seared back through my head and I screamed again. Another syringe flashed in front of me and I felt better. I asked again if the surgery was over. I could not believe it.
For the next bit of time (I have no idea how long any of this took) I kept asking for more water, more water, and the pain never ended. They wheeled me to a critical care room in the neurological wing then brought in my wife and a friend who had sat with her the whole time through my surgery.
I needed more water and kept asking for it. Pain relief and water was all I wanted. I never knew who the people were around me because it hurt to open my eyes. Soon enough I could hear MJ's voice. Another straw was put to my lips and I sucked down a full glass of water and then gasped for air. I felt my wife's hand, clenched it, then felt for her friend's hand and clenched that too. I held both so tightly and cried out.
Not much else is clear, but later that night MJ had gone home and I knew I was alone with a nurse. Every time I woke my mouth was dry and baked. An oxygen tube dangled in my mouth because my nasal passages were sealed shut with surgical packing. I lay flat on my back and often my tongue would fall to the back of my dry throat and stick there, cutting off my air supply. I would jolt awake, gasping for air, begging for water, sometimes chewing on the oxygen tube in desperation. Then a sear of pain would hit. Then a syringe would flash by again. Then the whole process would repeat and repeat.
One point during that first night, I opened my eyes to see the nurse studying me closely, standing up and taking notes on her laptop which sat atop a lectern. I was so disoriented. All I remember asking over and over again was whether my dog was at the foot of my bed, whether he was okay, and whether she had given him his evening pills. I asked her this over and over, and she typed notes about this on her laptop.
One thing I never would have predicted last Sunday was that I would be walking outside on my own today—this Sunday morning—retrieving the paper from the driveway and sitting down with it in my Lions sweatshirt, sorting through the various sections. I continue to be dizzy taking even short walks to different parts of the house, but the thought that in one single week a tumor has been extracted from my head and I am thinking normally and doing normal things in my own house just amazes me.