According to my datebook, it's only been a week that I've been referring to my weekends as sicksleep. It feels like the term had to be part of my vocabulary far longer. Yesterday, like clockwork, I slept from the moment I returned from my fateful CT scan (not that I know my fate, only that the test will prove fateful). I had some ritz crackers yesterday, and otherwise slept without dreaming. Overnight, however, a shift. Dreams, which normally do not inhabit my sicksleep. Weird dreams with all types of strange transportation. No reason to bore you with the details. With enough phone ringing, however, I woke up more than 20% of the way before noon. I couldn't fall back to sleep, and read a magazine (to my blog follower who can relay this message, SMG looks damn good in EW this week). I made it all the way to the basement and brought up the baby books, need to keep them safe from Irene. I ate cereal. And still stayed awake. So when Ken mentioned going in search of D batteries, I was still awake, and agreed to tag along!
That's right. I left the house during sicksleep for the first time in weeks. And in the rain, which I think helped. We went a few different places, to no avail. No Ds, no Cs, and of course, no flashlights. Not sure what type of Irenaggedon (sorry, I've been watching a lot of The Daily Show lately) we're expecting, but we may just lose a couple pivotal letters. One of which is for cookie, which is always good enough for me, and would result in the saddest loss.
I'm still a nut driving a scooter. I'm really good at it, and most scooter drivers out there are, um, not. For me, it's fun sport, though, and while walking would be preferable, scooters turn on a 0-degree radius, which is an awesome trick in the toothpaste aisle. Unfortunately, I'm not making THAT great of an impression with my inability to walk all the way through Target or Lowe's or the market. I can stand to reach the high shelves, of course. I can walk a few steps away to scan groceries. People must wonder why the heck I need a scooter. Or I imagine this as I want to answer unasked questions by shouting that I have no energy and am lucky to be out during sicksleep. There are so many days I never make it beyond my bedroom door, or when a trip to the bathroom requires significant planning. Today I made it out of the house, and I am kind of proud of that.
Dr. Fox sort of backpedaled on Wednesday about switching me to the chemo pill, so clearly quite a lot is riding on my CT scan. I may have more sicksleeps in store. I may have more days in my cushioned, king-sized square, or I may have more outings involving a scooter. I'll take the scooter over the bed if I have the choice, so if you see me out and not quite independently mobile, be glad for me!
Saturday, August 27, 2011
Thursday, August 18, 2011
Why My Summer Vacation Report is Late, and Why I Should Still Get an A
I'm a procrastinator, but I'm not a complainer. On the surface, the two traits seem completely unrelated, so I will relate them for you. I did not procrastinate writing in this blog, I simply had so little to say that would not sound like a complaint, I couldn't bear to type anything. I abhor complaining, frankly. If you're in my life, you either do not do it much, or you're my mother. Now, with actual potential on the horizon, I feel freer to let loose and share the shit. And then I can get to the good part :)
The truth is, life like this sucks. Ixebipillone or however you spell this chemo drug's name is horrible, creepy stuff. It starts off fine, and then it sneaks into your cells and bones and brain. With happy prednisone to counteract its ill effects, this chemo bestows a slow and deceptive descent. However, the prednisone vanishes, fewer pills to take each cycle, and insidious Ixebipilone roars forward into my veins and steals my life. The last few weeks have been increasingly miserable. It begins with a frustrating five hours a week in the chemo suite. The actual chemo drip is three hours, but there's always a long delay getting up to the suite from the pharmacy. By late the next day I can't eat, I have to eat, I stare at the refrigerator, everything inside smells terrible. I want to retch, as always, but it's useless, as always. My drip is on Wednesday, when I feel good. Thursday I decline ever so slightly. By Friday at noon I'm holed up somewhere in my house, completely incapacitated. It lasts and lasts. I see my visitors' belongings, but mostly I can never make my mouth move enough for a conversation and end up left alone with a view of a fancy purse. I can't sit up, therefore I can't use the computer. I drool, pass all kinds of gas. Feel tempted to drink less because going to the bathroom requires Herculean effort. I taste ... something. Something unkind, unwelcome, unidentifiable. My fingers and toes tingle, my feet freeze as the rest of my body perspires. Each week it lasts longer, takes over more of my days. Each week a new surprise. Like the hideous blood clot that passed from my sinus to my mouth on Sunday, that I coughed out onto my finger of all things. I started to ponder life with no quality of life, watching people I love grow increasingly nervous and sad. What's to be done about that?
Despite all this, I decided to go back to my first grade teaching position in September, blessed by the understanding principal who would let me take a half day off each week to go for chemo. It was insane to consider I could do it with just determination, so I was stockpiling other options to present to Dr. Fox today.
Armed with a complete cache of ammunition, I didn't kill myself or idiot drivers during my mad rush from New Teacher Orientation to Perelman's 3rd floor in 32 minutes, and it was with profound relief that I identified Jill sipping coffee in the waiting room. I should've taken it as a sign of things to come when I loudly announced to the somber waiting room, "Oh, my sister is here! I'm so happy my sister is here!" The phlebotomists are always informative. I could hang with them. Today, mine gave me lots of ideas for getting foood in on the bad days, which was helpful. Next stop, Lorelei the NP. I presented my litany of complaints and was prepared to ask for this med or that med or a blood transfusion to help me get more energy. Before I had the chance, Dr. Fox peeked in, and Lorelei excused herself to the hall to talk to him. She had already told me my blood and bilirubin counts continued to be at healthy levels.
Ten minutes later, an unsmiling Dr. Fox entered with two medical students and Lorelei. Was he worried, or being extra professional for the sake of the students? Lorelei had briefed him about my side effects, and he asked me to jump on the table for an exam. He felt all around my abdomen, then had the students do the same. I sat up as he presented my case history clinically for them, all facts included and correct. He reminded me that I would be having today's treatment and next week's, and then the CT scan a week later to determine the effectiveness of icky Ixabipillone. Yes, yes. "We really just need the scan to verify what we already know," Dr. Fox said. I gaped at him, holding my breath. "Obviously it's worked tremendously. That cancerous lymph node is gone, and everything looks and feels good. So I want to change your chemo." I breathed. This was turning into good news. It was just the beginning:
The new chemo is oral. I'll take my chemo pill each day, without side effects like nausea or exhaustion. My hair will stop falling out and what I've lost so far will grow back. I'll be able to be fully engaged in teaching first grade instead of figuring out how to make it tolerable. I'll feel just like me, with my real quality of life. I'll go on my cruise and dance badly. I won't need a wig. I'll set aside my handicapped placard. I'll visit Dr. Fox once a month for a blood draw and an update. I wanted to cry from the relief. I wasn't counting on an open window, or any sort of escape from prison. I just wanted out of solitary, and I was being handed my whole life. I was suddenly a non-evil, non-child killing Casey Anthony. I asked a few questions, the last among them whether I could hug him. So we hugged. Once Dr. Fox and his team were gone, the tears began to build as the full impact of chemo pill reached my taxed little brain. As I reentered the waiting room, realizing I was going to tell Ken and my mother and this blog this news, I started to bawl, making quite a spectacle of myself. A nurse came from the back, and I loudly announced to her and the nervous waiting room, "I'm so happy!" She gave me a hug, and then the receptionist came to join the party. Everyone was smiling.
I'm proud to have made a few people shed tears of joy over this news today. I'm back. I'm me. I'm going to get strong inside and out, feed my body the best foods on earth, and do whatever Dr. Fox wants me to do. Maybe my weird fortune cookie from last night didn't offer such an outlandish prediction: "You will live a long and heathy life." Just maybe.
The truth is, life like this sucks. Ixebipillone or however you spell this chemo drug's name is horrible, creepy stuff. It starts off fine, and then it sneaks into your cells and bones and brain. With happy prednisone to counteract its ill effects, this chemo bestows a slow and deceptive descent. However, the prednisone vanishes, fewer pills to take each cycle, and insidious Ixebipilone roars forward into my veins and steals my life. The last few weeks have been increasingly miserable. It begins with a frustrating five hours a week in the chemo suite. The actual chemo drip is three hours, but there's always a long delay getting up to the suite from the pharmacy. By late the next day I can't eat, I have to eat, I stare at the refrigerator, everything inside smells terrible. I want to retch, as always, but it's useless, as always. My drip is on Wednesday, when I feel good. Thursday I decline ever so slightly. By Friday at noon I'm holed up somewhere in my house, completely incapacitated. It lasts and lasts. I see my visitors' belongings, but mostly I can never make my mouth move enough for a conversation and end up left alone with a view of a fancy purse. I can't sit up, therefore I can't use the computer. I drool, pass all kinds of gas. Feel tempted to drink less because going to the bathroom requires Herculean effort. I taste ... something. Something unkind, unwelcome, unidentifiable. My fingers and toes tingle, my feet freeze as the rest of my body perspires. Each week it lasts longer, takes over more of my days. Each week a new surprise. Like the hideous blood clot that passed from my sinus to my mouth on Sunday, that I coughed out onto my finger of all things. I started to ponder life with no quality of life, watching people I love grow increasingly nervous and sad. What's to be done about that?
Despite all this, I decided to go back to my first grade teaching position in September, blessed by the understanding principal who would let me take a half day off each week to go for chemo. It was insane to consider I could do it with just determination, so I was stockpiling other options to present to Dr. Fox today.
Armed with a complete cache of ammunition, I didn't kill myself or idiot drivers during my mad rush from New Teacher Orientation to Perelman's 3rd floor in 32 minutes, and it was with profound relief that I identified Jill sipping coffee in the waiting room. I should've taken it as a sign of things to come when I loudly announced to the somber waiting room, "Oh, my sister is here! I'm so happy my sister is here!" The phlebotomists are always informative. I could hang with them. Today, mine gave me lots of ideas for getting foood in on the bad days, which was helpful. Next stop, Lorelei the NP. I presented my litany of complaints and was prepared to ask for this med or that med or a blood transfusion to help me get more energy. Before I had the chance, Dr. Fox peeked in, and Lorelei excused herself to the hall to talk to him. She had already told me my blood and bilirubin counts continued to be at healthy levels.
Ten minutes later, an unsmiling Dr. Fox entered with two medical students and Lorelei. Was he worried, or being extra professional for the sake of the students? Lorelei had briefed him about my side effects, and he asked me to jump on the table for an exam. He felt all around my abdomen, then had the students do the same. I sat up as he presented my case history clinically for them, all facts included and correct. He reminded me that I would be having today's treatment and next week's, and then the CT scan a week later to determine the effectiveness of icky Ixabipillone. Yes, yes. "We really just need the scan to verify what we already know," Dr. Fox said. I gaped at him, holding my breath. "Obviously it's worked tremendously. That cancerous lymph node is gone, and everything looks and feels good. So I want to change your chemo." I breathed. This was turning into good news. It was just the beginning:
The new chemo is oral. I'll take my chemo pill each day, without side effects like nausea or exhaustion. My hair will stop falling out and what I've lost so far will grow back. I'll be able to be fully engaged in teaching first grade instead of figuring out how to make it tolerable. I'll feel just like me, with my real quality of life. I'll go on my cruise and dance badly. I won't need a wig. I'll set aside my handicapped placard. I'll visit Dr. Fox once a month for a blood draw and an update. I wanted to cry from the relief. I wasn't counting on an open window, or any sort of escape from prison. I just wanted out of solitary, and I was being handed my whole life. I was suddenly a non-evil, non-child killing Casey Anthony. I asked a few questions, the last among them whether I could hug him. So we hugged. Once Dr. Fox and his team were gone, the tears began to build as the full impact of chemo pill reached my taxed little brain. As I reentered the waiting room, realizing I was going to tell Ken and my mother and this blog this news, I started to bawl, making quite a spectacle of myself. A nurse came from the back, and I loudly announced to her and the nervous waiting room, "I'm so happy!" She gave me a hug, and then the receptionist came to join the party. Everyone was smiling.
I'm proud to have made a few people shed tears of joy over this news today. I'm back. I'm me. I'm going to get strong inside and out, feed my body the best foods on earth, and do whatever Dr. Fox wants me to do. Maybe my weird fortune cookie from last night didn't offer such an outlandish prediction: "You will live a long and heathy life." Just maybe.
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