Friday, January 15, 2016
I had been terribly ill for months. My gut was sick, and the needs of Dear Husband, who requires constant supervision and care, were exhausting me. I ate well but grew weaker and weaker. I dropped all my community involvement, one organization at a time. The last thing to go was writing this blog.
The gut pain became so great that I thought I had yet another kidney stone. My PCP sent me to a urologist (an urologist???). He ordered an MRI and then went out of town. His surgeon colleague read the MRI and sent word that I needed surgery for diverticulitis.
I asked my PCP's office for a referral to the surgeon. The nurse told me that I didn't need surgery, that my diverticulitis could be cured by antibiotics, so she had my PCP order yet another round. I asked why the surgeon would say I needed surgery if I didn't. She said, "That's what surgeons do."
I finished the antibiotics. And I got sicker.
I went to the local urgent care clinic because it was a Friday and my PCP is gone on Friday. All the toilets at the clinic were filled up, shaken together, and running over down the hallways, which was causing great consternation to the nursing staff. A nurse stood at the door and turned patients away. She told me to go to the ER. After six hours in the ER and another MRI, the doctor sent me home with more antibiotics.
Ten days later, still desperately ill, I went back to my PCP on a Wednesday. He wasn't in. The office sent me to the ER. The ER MRI'ed me and offered to admit me to the hospital. I asked the ER doctor whether he would be admitted if he were I. He said, "No," so I declined.
The next day, the hospital's gastroenterologist reviewed my MRI. Her office called and told me to go to the ER and be admitted to the hospital. I needed IV antibiotics for raging antibiotic-resistant diverticulitis.
I spent six days on multiple types of antibiotics, even having an infectious disease specialist become one of my consults because of the intransigence of my infection. The problem was exacerbated by the fact that I am severely allergic to penicillin and Keflex. I developed a localized allergic reaction to Levaquin while I was there. Watching my veins turn red as the Levaquin worked its way up my forearm was both fascinating and frightening. The nurse shot me full of Benedryl and we watched the arm turn white again. Continued the Levaquin paired with Benedryl. And continued trying a bunch of other antibiotics that I can't remember the names of.
After six days, I went home weak, but better. The gastroenterologist and the surgeon said my sigmoid colon needed to be removed, but I needed to get my gut calmed down before surgery. The plan was to do surgery in three to six months; six was ideal. A quarter of the people who have colon surgery during a severe diverticulitis attack die during their hospitalization. You don't want to operate on a sick colon, but a healthy one. Ideally, one that's been healthy for six months.
Two days after I returned home, I fell down the stairs and broke my ankle.
Back to the ER, this time in an ambulance because my husband can't drive.
Two weeks later on a Sunday, my gut was so sick that I knew I was in trouble. I wasn't supposed to have surgery for a minimum of three months of uninfected colon, so I went back to the ER. More oral antibiotics. Back home. Weak and visibly losing my life force. Pretty sure I was dying. Which I was.
The surgeon's office called me the next day and said we were moving the surgery up. The date was set for three days later, even with the risks of a raging infection. I picked up the drugs to clean out my colon, and when I started on them I became so ill that I knew I was in trouble. I started to cry and called the surgeon's nurse. After calls back and forth, she said, "Go admit yourself through the ER. We will have the papers ready when you get there."
Fifth trip to the ER. By ambulance. I was too sick to drive, and Dear Husband can't. Admission, IV antibiotics.
Next morning, surgery. Supposed to be one hour.
The surgeon removed my sigmoid colon and attached my descending colon to my rectum. He inflated it to ensure that it had no leaks.
That's when my descending colon exploded.
Blew the hell up.
Surgeon said he'd never experienced anything like it in his 22 years as a surgeon. Never even heard of it happening. He said, "I had one minute to decide what to do. I could either give you a colostomy bag that I might never be able to reverse, or I could take out your entire colon and attach your small intestine to your rectum. That's what I would have wanted if I had been lying on the table, so that's what I did."
I asked this unemotional man later what he felt at The Moment. He said, "They teach you in school that surgery is 99% boring procedure and 1% sheer terror. That moment was terror."
Then, unemotional again, he sliced open my belly right under my rib cage to match the slice he'd initially made right above my pubic bone. First he peritoneal lavaged me. Then he surgically disemboweled me. Literally dis-em-boweled me.
Everything in my abdomen was stuck to everything else from the years of infection in my gut, as well as from my previous surgeries and recurrent UTIs from kidney stones. In places where my colon should have been two inches in diameter, it was five due to the current infection and previous scarring. The surgeon had to meticulously detach the hideous, seething colon from my other abdominal structures, and a one hour surgery became five. The hospital had to cancel the rest of his day's surgeries.
I was in the hospital for eleven days, much of which I can't remember because I was so close to death. Part of the problem was that I was acutely malnourished since my body hadn't been able to absorb any protein for God knows how long. I received multiple pure-protein IV drips, and as I understand it, four packed-red-blood-cell transfusions, which is the equivalent of eight regular red-blood-cell transfusions.
My surgeon wanted me to go straight downstairs into in-hospital rehab for three weeks because I was so ill. He said, "You're not strong enough to go home. We need to build your body back up. You can't take care of yourself, much less your husband."
I will not go into all the details about why I had to go home instead of in-hospital rehab, but suffice it to say that the journey has been long and difficult. The gastroenterologist said it would take a year for me to be well again. She's right.
I've learned to live with diarrhea eight to ten times a day, but at least I have no pain with it. I will never have colon cancer. I will never have another attack of diverticulitis. I will never have to have another goddam colonoscopy. I can eat popcorn, tomato seeds, and strawberries. And no one can EVER tell me, "You're full of shit," because I can provide medical documentation that I am not.
So I here I am, such as I am. A significant portion of my brain is gone from my golf-ball sized meningioma; the hangy-down-thing in the back of my throat is gone because it was 250% too large and choking me; my adenoids and tonsils are gone from chronic infection; my uterus and cervix are gone from endometriosis; my gall bladder is gone from a near rupture; the appendix went as a freebie with the gall bladder; a third of my rectum is gone from maceration and was rebuilt from colon tissue twenty years ago when I still had a colon; and now my colon is gone. As my junior-high-band-director dad says, imitating the Palace Guard skit from the old Carol Burnett Show, "She's HALLOW!"
So that's where I've been since my last blog post. Spending hours a day having diarrhea. Going to doctors. Coming to understand the finer points of toilet paper and baby wipes. Developing an appreciation for Boudreaux's Butt Paste on my poor, sore bottom.
I'm not well yet. I have another five months before my recovery year is up. But I'm back writing again, and I'm starting to play my clarinet with my band friends again. So I'm healing. And that's a good thing.
Saturday, March 21, 2015
I learned that people do strange things with rubber bands, like Joel Waul, who holds the world's record for the largest ball of rubber bands: an 8-foot-tall, four-and-a-half-ton ball of 700,000 rubber bands. He sold it to Ripley's Believe It or Not for a ton of money. Believe it or not.
Some other things people do with rubber bands are even stranger.
Monday, March 9, 2015
Sunday, March 8, 2015
Saturday, February 28, 2015
I own ten globes, including a chinoiserie, a gemstone, and an astronomical night sky globe. In order to call yourself a collector of something, you must have at least three members of that class of items and then must study, organize, display, and enjoy discussing them. I meet that criteria, so I can call myself a collector of globes.
Tuesday, February 24, 2015
I don't know whether or not our father taught my brother how to actually stand up for what he believed in, but he didn't teach me how to, perhaps because I was a girl. Girls were supposed to be seen and not heard. Girls were supposed to be nice and not make waves. I know this because my mother told me so. Repeatedly.
So until the fall of my eighth grade year, I was nice. I had principles to which I was committed, but I lacked the know how- or the courage- to do anything about them.
Then came The Day That Everything Changed.
My junior high band director, Mr. Phillip Wilson, had reserved the football field for first period so we could practice our half-time show for the game that night. The rest of the week, we practiced on the old marching practice field north of the football field. But we always practiced on the football field on game day.
When we marched out to the field, we were met by a large PE class with their fearsome teacher and monstrous student teacher. Mr. Wilson politely told the PE teachers that we had reserved the field for that morning. The fearsome teacher refused to leave and told the students not to give up the field to the band.
Mr. Wilson stormed back across the field to us like MacArthur, Montgomery, Marshall, and Patton rolled into one. Face crimson with the little patches of white he got when he was mightily riled, he shouted, "People, you are the Marshall Junior High School Band! This field is reserved for you this morning. Those people refuse to yield it to us. This field is ours, and we are going to take it!"
We woodwind players stared wide-eyed. The brass players squared their shoulders. The drummers whispered, "Hot Damn!"
Then General Wilson said, "People, you are to march straight ahead. Do not look to the right or left. Do not step to the right or left. If those people don't move, you are NOT going to march around them. You are going to march right over them. Do you understand me?"
Mr.Wilson signaled the drum major who counted us off. Then the snare drums started to roll, the bass drum shook the earth, the brasses straightened the pipes, and we woodwinds shrieked until we split the heavens. The irresistible force began marching toward the immovable object.
In an instant, I understood what I was part of. My fear evaporated, and I realized that this was a watershed moment for me. I not only believed in justice, but I was going to act on that belief for the first time. I was going to stand shoulder to shoulder with my band of brothers and sisters and confront the enemy. I was brave.
As we marched across the field, the PE students scattered, and even the fierce old PE teacher headed for the sidelines. But the monstrous, murder-in-the-eyes student teacher wasn't going to move and squared off with us. So our feisty little trombone player followed orders and plowed right into that immovable object. Then he stomped hard on the foot that was in his path and kept moving forward. He was the hero of the hour.
That day, Mr. Wilson taught the entire band that we could fight injustice. That we could be brave.
That moment was such a hallmark in my life that I have fought abusive authority ever since. That moment was the reason that decades later a respected colleague told me, "You've got brass balls, you know that?"
Yes, I knew that. Because I earned those brass balls on the football field at Marshall Junior High School as part of the Marshall Junior High School Band. I earned them because my band director, Mr. Wilson, taught us that we had brass balls by expecting us to act like we did. He taught us courage.
So I thank you, Mr. Wilson, for what you did for all of us.
But I thank you especially for what you did for me. You took me, an eighth grader who believed in justice, but who was too scared to do anything about it. And you gave me brass balls that have lasted for the rest of my life.
And for that, Sir, I am eternally grateful.