If only I had TMJ
Mid January 2011, things started getting weird. I wasn't feeling incredibly motivated at work. I felt tired and unfocused. Then one night I started feeling an aching pain in my cheekbones and teeth. The pain began to radiate down my neck. I had just been to the dentist and thought, "hmm maybe I have an infection". Of course Missy caught me standing in front of the mirror with my mouth open as wide as it could go (which those of you who know me can verify...is pretty wide. Think tennis ball) trying to peer inside my mouth. To my horror I noticed a small black spot on my gum. The next morning I went to the walk in clinic to ask them about the pain in my face, the mysterious black spot, and also to have them check my urine, which Missy kept reminding me was really frothy (like a head of cheap beer in the toilet)...sorry for the details. They told me they had no idea what the black spot was, and if anything I had TMJ, and that my urine was fine. They gave me some pain killers and I went on my merry way. I made an appointment with the dentist just to be sure. He told me that I didn't have TMJ, but I should stop eating bagels or anything really chewy for a while to give my jaw a break. He said the black spot was an amalgam tatoo, which often gets left behind by dental tools. Ahh, my first tattoo. Not quite a bad ass eagle across my chest, but a tattoo all the same. As I left his office feeling somewhat relieved, i thought about buying a motorcycle...with a sidecar.
Crazy...
Soon after the trip to the clinic, I began experiencing sharp pain in my lower back that radiated around my hips into my groin and down the inside of my leg to my knee. In fact I remember limping into the dentist office, never imagining that the pain in my face and the pain in my back could be connected. The back pain I was sure I had an explanation for. Over the holidays I had done a lot of snowshoeing. One particular day I carried Ethan on my back, and hauled Brogan in a sled, a mile up the ridge behind our house. Shortly after that Brian and I did a 2.5 hour slog in the Hinesburg town forest with Brogan on my back. And not long after that another 5 hour jaunt with Jimmy. My thought was that I must have aggravated my old nemesis, sciatica. I went to the doctor, and he agreed. He prescribed a steriod and some more pain killers, then he sent me home to ride it out. Next came the most painful night of my life.
The steroid and painkillers seemed to be working after just one day, and I was feeling pretty good. In fact I demonstrated to the family just how well I was feeling with a pretty sweet dance, replete with every hip gyration I could muster. Later Missy and I put the kids to bed and were settling in to watch a movie when I began to feel slight spasms of pain in my back. Over the course of an hour I turned into a groveling wreck. My whole body was spasming with pain. I begged Missy to take me to the hospital or call an ambulance. However after three weeks of me complaining of one pain or another and going to the emergency room, dentist, and doctor almost routinely, we both were beginning to think I might be going crazy. She refused to take me to the hospital or call an ambulance. Instead she informed me that she had been through child birth before and that we were going to get control of this pain through breathing exercises. We got down on the living room floor and did breathing exercises through the night. It never really worked, and finally at 9:00 the next morning we made the excruciating drive to the hospital. I was balled up and crying when I walked through the door, and one of the nurses said to me, "So is this your first time with kidney stones" I said I don't think that's it. I don't remember too much after that other than a nurse asking me what kind of cocktail I'd like. Whatever she pushed into my vein took the wind out of me and then knocked me into sweet painfree la la land. When I finally woke up, they sent me home with still more pain killers and valium, but no explanation. Funny thing is all of the places I visited were part of the same network, so everyone was able to see all the drugs that had been given to me in the last 3 weeks, but no one seemed to mind or was concerned to look further.
The Breakthrough
Missy made yet another follow up appointment with my doctor (I was basically incapacitated by this time) and got signed up for physical therapy. Still no real investigation. We all thought it was due to overexertion and sciatica. The first PT session actually seemed to help some, but on the day of the third session I was in severe pain, not in my lower back but my upper back. The pain was radiating around to my chest, and I was having trouble breathing. I also had very tender spots on my shoulders. I mentioned this to the physical therapist and he looked at me with what was now a familiar look of disbelief, but he had me do a few movements and then stopped me and said, "I can't help you with this, its not mechanical. You need to go back to your doctor."
Already in severe pain, and having trouble breathing I decided enough is enough. I drove myself to the hospital, and checked into the emergency room for the 3rd time. I called Missy, and could tell by her voice she was getting really worried. She got our neighbor to watch the boys, and came to the hospital. The doctor that saw me, finally ordered a full workup, blood, urine, ekg. When Missy arrived she was relieved to hear that someone was finally taking a close look at me. After a 2 hour wait, the doctor returned to the room and told us that something was up. My blood counts were off. Specifically my white blood cells. She said it could be something as benign as an infection or possibly something "malignant". While were shocked to hear the word, neither one of us believed that's what it was. They decided to admit me and do more tests. And so on January 31, 2011, I began a 35 day stay at Fletcher Allen hospital.
The Diagnosis
Over the next few days I relinquished what dignity I thought I had. My first night I had to have a temporary catheter put in by a young nurse, because due to all the painkillers, I couldn't pee. I asked for a pillow to put over my face, and moaned and groaned the whole way through it. The poor guy I shared the room with had to sit there and listen to me. Definitely one of the more uncomfortable procedures I've ever been through. The next day I had my first enema. They needed to shoot dye up my ass so that they could take a look at my insides. I had x-rays taken literally of every bone in my body. I had a full body MRI, and more blood drawn than I believed was prudent. All of the tests were coming up clean more or less. They did see my spleen was slightly enlarged and knew my kidney was functioning at only 50%, but other than that nothing was really pointing to anything. After 3 days of coming up dry, they ordered a bone marrow biopsy as my last check, before they were going to send me off to Infectious Disease or Autoimmune Disorders. While nothing definitive was showing up, my counts were continuing to go down. Missy was with me for the biopsy on Feb. 3rd. They basically drill a hole into your pelvis, aspirate some blood cells and then go in for a piece of the marrow. The test was done at 11:30 a.m. and at 4:20 the doctor came in to see us. Their was a harp player in the room (a hospital perk), and he asked her to leave. Missy was still there and her Mom had also popped in to see me. The doctor sat down and was definitely uncomfortable...visibly sweating. He gave us the diagnosis. At first when I heard the word's Acute Myloid Luekemia, I was relieved. I thought to myself... Ah ha I was right, the pain was real, and now I can get down to the business of getting better. Quickly my relief was replaced by many emotions. Knowing how the diagnosis was hitting Missy, watching her try to control her emotions and then hearing her sob when the doctor said Leukemia, was absolutely the worst feeling in the world. I felt a deep sense of guilt for bringing this burden to our lives, and totally helpless in making her feel better. In a paltry effort at sounding valiant I said to the doctor, "good...ok...well what do we have to do to fix it". Needless to say it was a long night.
No comments:
Post a Comment