Leiden, The Netherlands
I wanted to start this blog for months. I wanted to start it with an entry about my near-death experience last November so I could direct people to it and I wouldn't have to tell the whole story in case they wanted to know about it. At first I was excited to tell people about it because it was so odd and shocking. Hey you will never believe what happened to me! It turns out my body is traitorous! Who even knew that could happen? But now I think denial mode is the best way to live it. My weird ailments don't define me. I do recognize they exist but I refuse to allow them to make the rules and I just want to use the experience to further clarify my ambitions. The only rules or restrictions I've ever liked are ones I set myself that are small and manageable, like 'Stacey, don't drink more than two cups of tea per day.' It isn't like I cry or shake when I talk about my health or my experiences. I just would like the world to know that although I have some permanent damage to my physical capabilities and may not live to be as old as some, and I have lots of doctors and lots of appointments, the essential part of me is not diminished and never will be as long as I draw breath.
I've found it so difficult to write even grocery lists. I thought maybe I needed to trick myself into writing. And so I was finally able to write the story down when I decided to write it to a new pen pal that I have never met from a country very far from here. I wish I had thought of the format sooner, as I've always found writing to be therapeutic whether it's grim or silly. For many reasons designing the writing around a person I've never met made the writing pretty easy, and the pen pal is very kind and encouraged me to write, so I plan to continue writing emails. Hopefully I'll be able to at least write some small things in this blog too.
Dear *,
It is still March 31st in Ohio (*Sentence redacted to protect the innocent*). I am watching Jean Cocteau's Orphée as I write this. Jean-Pierre Melville just turned up as a hotel desk clerk.
Last October I had the rest of my wisdom teeth taken out under anesthesia. I had some nerve damage in my jaw and started laying around quite a bit. The pain finally started to get better on a Monday but my legs started to hurt. It felt like a never-ending cramp, especially in my left leg. By Tuesday night I could barely walk. I took off from work Wednesday and went to the doctor. He thought maybe I had low potassium or something and did a blood test and gave me a drug for inflammation. At night when I laid down my face felt strange and my hands went numb. On Thursday I was still hurting, so I called the nurse to ask about the blood test. She said it was fine. I said, hey, I'm still hurting. She said she didn't know, maybe I should go to the emergency room if it was so bad. At this point my lower back started to hurt. I was going to have my mom take me to the ER, but suddenly I felt much better. The cramping in my legs was gone.
A couple of hours later my leg cramped up even tighter than it was before. I laid down for bed and again my arms and face felt numb. The next day, Friday, I resolved again to have my mother take me to the ER after she came home from work. She was finishing up a few things because she had a hip replacement scheduled that Monday. I started to feel a little out of breath. She came and picked me up, we went and got a sandwich and a Frosty from Wendy's so I could eat something quickly before waiting for hours at the ER. I propped my leg up and ate the hell out of that Frosty. Never had it tasted so good. What a last supper!
I got to the ER and they took my vitals. The person taking them didn't say what they were, but quickly put me in a wheelchair and took me to a room. Normally, it takes an hour just for someone to come take your insurance info, let alone see a medical professional, but a doctor came in about ten or fifteen minutes to the room. He pointed to my left leg. I think you have a blood clot, he said. He came up close to me on the gurney and spoke to me a bit. And, he said, I think you have a blood clot in your lungs.
My mother and I looked at each other. What the hell? My legs weren't red, or swollen, or hot to the touch, or any other usual sign of blood clots. Even the nurse said she had bet the doctor that he would be wrong.
Well, *, guess what? He was right. He saved my life. I had a gigantic 'saddle' pulmonary embolism laying over my heart and both lungs. They thought it had come upstairs from my leg during that brief period when it felt better. The leg had reclotted and was now blocked from my ankle to my hip bone, with a small baby clot in my right ankle. If I had waited any longer, if I had lingered over my Frosty, I might be dead. In fact, most things I have read about saddle clots say they are usually diagnosed on autopsy. Most people have a few baby clots in one or both lungs, not one giant one clotting up everything in sight, and many die as soon as it reaches the lungs. My lung doctor said if I had ever been a smoker or had otherwise compromised lungs I would be dead for sure.
So I was given morphine for the first time (you'll never believe the things I said and how I laughed and joked!) and taken up to the intensive care unit. On Saturday, the doctor told me it was very serious and I could die. On Sunday I had a central line put in and kept open in the jugular vein in my neck. A permanent mesh filter was put through it down into my abdomen to keep any more friends from coming upstairs. A catheter was put in my leg to pump a clot-busting med called TPA through my body, though it might cause a stroke in my brain. My doctor said I would live. On Monday the radiologist worked on my awful left leg to see if he could get rid of any of the clot, and he did from my knee to my hip, but couldn't help ankle to knee. On Wednesday I was allowed to come off complete bed rest and was moved out of the ICU. On Sunday, the day before my 30th birthday, I came home.
For a while, things were quite bad. I was afraid every pain in my leg meant I might have to go back to the hospital, which I dreaded. One day I almost passed out and couldn't catch my breath and had to spend the day in the ER. I had to be put on a blood thinning medicine called coumadin, or warfarin, and have blood tests to make sure it didn't cause internal bleeding. In December I learned I have a blood clotting genetic disorder named Factor V Leiden Thrombophilia. It's named after an innocuous-looking city in the Netherlands where they found it in a family in the 1990s. Thrombophilia literally means love of blood clots. That disorder, and the anesthesia from the wisdom teeth, and the laying around, and other risk factors led to my little adventure. My hematologist advises that I be on coumadin for life, which means always blood tests, and never a rugby or contact sport career, and you know how I dreamed of rugby, ha. No.
In February I had another operation to see if the radiologist could help the clot from my ankle to my knee. He couldn't, so my leg will probably always swell and hurt at times. At least I can walk. And swim maybe this summer. My leg hurt quite badly for a while after that operation and I was afraid it was for always, but I am much better now.
I haven't socialized almost at all since it happened. I think I'm afraid of people's pity. I would rather use the power of human denial and pretend as much as possible that it never happened. I don't want to be one of those boring people in love with their own illness, their own fragility. Or their own death, like Orphée!
I hope you are doing well. I have lots of stories, not all so grim, so maybe I will write to you again. (*Sentence redacted to protect the innocent*). I had almost written to you before, but I suppose I was just waiting for a good dramatic story to tell you.
Sincerely,
Stacey Gunckle
"Spring and All" by William Carlos Williams is one of my favorite poetic works. Here is my favorite part, that is hesitantly life-affirming and reminds me that my name means 'resurrection':
By the road to the contagious hospital under the surge of the blue mottled clouds driven from the northeast-a cold wind. Beyond, the waste of broad, muddy fields brown with dried weeds, standing and fallen patches of standing water the scattering of tall trees All along the road the reddish purplish, forked, upstanding, twiggy stuff of bushes and small trees with dead, brown leaves under them leafless vines- Lifeless in appearance, sluggish dazed spring approaches- They enter the new world naked, cold, uncertain of all save that they enter. All about them the cold, familiar wind- Now the grass, tomorrow the stiff curl of wildcarrot leaf One by one objects are defined- It quickens: clarity, outline of leaf But now the stark dignity of entrance-Still, the profound change has come upon them: rooted, they grip down and begin to awaken
