Well, the results of the CT scan are official, and they're as good as Dr. Fox thought. So there's very little cancer remaining in my liver! What's more, I feel terrific! I haven't felt this good without prednisone since before this all started. I look like myself, and I feel like myself. I'm suddenly not worrying about every little thing out of the ordinary, or scouring my body for signs of leukemia or lymphoma (amazing how paranoid it's possible to become). My stomach is going back to normal, although I'm off the Xeloda for one more week because of intestinal distress. I still have what I now know to be called hand, foot syndrome (catchy name)by the nurses at Genentech, which manufactures Xeloda. I can live with that. My optimism is overflowing, perhaps too much.
I'm certainly not out of the woods. I'm not in remission, and Dr. Fox didn't mention remission. I feel like I must be near remission, but how could I possibly know for sure? I think Dr. Fox plans to keep me on Xeloda for years, he's done it with other patients. I'm still a chemo patient and I'm indefinitely a chemo patient. If I start to go downhill or if cancer pops up in some other part of my body, it will be as devastating as learning it for the first time. I can't go through that trauma again. You saw my posts from last June, but even that didn't adequately express how horrible it was. I kept thinking I could die any moment, that I could just keel over while getting an exuberant group of first graders through the last few days of school. My head tingled. It didn't hurt, it was just impossibly overloaded. So now I'm a bit nervous about not being afraid. Be glad you're not me. Because I told a teacher's aide that I'm not looking for a long-term or permanent teaching job because I'm recovering from a long illness, which made me feel like I jinxed myself somehow. How did those words fall out of my mouth? I'm recovering from a long illness? I hope! Ugh.
Friday, January 27, 2012
Wednesday, January 18, 2012
A Day at Penn
Actually, I started out at the dermatologist's office at 8:30 in the morning for my annual checkup (I've had a couple suspicious lesions removed in the past). She gave me a sample lotion that she thought might help my hands and feet, which was nice, and she waived my copay! Even nicer! She also told me that the new brown spots on my face and elsewhere are pigment changes from the Xeloda. Otherwise, all's well with my skin this year, no need for scraping.
Civia came with me to Penn for a lovely girls' day out -- waiting for me to return from a CT scan, waiting for Dr. Fox, waiting, waiting, waiting. In the car, she squirted some of the dermatologist's lotion onto my hand, and when I rubbed it in it stuck there and turned to chalk. In the meantime, she'd used it, too, so we both arrived in Philly with dry, chalk white hands. Civia said it looked like we'd painted ourselves with Wite-Out. Oh right, back to Penn. We did get to go for lunch, but considering Mother Nature slapped her head and realized it's January in Philadelphia, we didn't go exploring the campus for a great lunch. We stopped at Potbelly at Penn Tower, which was fine. I had soup. So.
That stuff you have to drink for an abdominal CT scan is abominable. It doesn't even have a name, it's just called that stuff (okay, pardon me, but "contrast" isn't a much better name). My stomach is still killing me, and I finished that horrible liquid about 10 hours ago. My laptop is resting on my lap, just below the gurgling of curses my poor, pissed off belly is hailing at me.
Dr. Fox came into the exam room, squeezed my shoulder in greeting as he entered, and sat down at the computer to log in. He asked us to hang on a minute, and then he grunted at the screen. He said something about having to change the language, and then grunted a bit more. I got nervous, thinking he was upset with my test results or something. Note to Dr. Fox: don't grunt near paranoid cancer patients. Finally he just moved us to the next exam room (my mother had appeared with us by this time). The first computer was not cooperating. Whew!
In the meantime, he did get an earful about how I was feeling, and learned that my extremities are worse rather than improved after decreasing my Xeloda dose. He said my official CT scan results would not be available for a couple days, that I should call on Monday to hear the findings. In the meantime, he could look at the pictures on the screen. He scrolled through them, and though I could see, I couldn't tell what was good or not good. He turned back to us and said my liver looks good. Then he decided to show us, so he pulled up August's CT scan to help us compare. In August the cancer was easy to see when he pointed it out, and it was pretty much all over. Today's scan showed very little visible cancer, I had to strain to see anything out of the ordinary, honestly.
So. Good news and bad news: the chemo is killing the cancer, but it's also harming me. But it's killing the cancer! But I still can't eat. But ... what a difference in the pictures! But, ouch, my stomach! Chemo, cancer, chemo, cancer. Score for chemo, that's for sure. Staying on it like this, though, is not an option. Right now, I take 7 days on and 7 days off. This is my off week. Now I'm getting a second off week, to hopefully improve my side effects. When I start again, I'll decrease again, from 6 pills a day to 5. I hope this works! If not, Dr. Fox says he'll just decrease by one more pill and try again.
My mom and Civia hugged me and looked thrilled about the good news. I'm oddly ambivalent, and can't figure out why. Do I no longer trust good news? I have to get over that, if it's true. After all, it's 2012! Anything can happen.
Civia came with me to Penn for a lovely girls' day out -- waiting for me to return from a CT scan, waiting for Dr. Fox, waiting, waiting, waiting. In the car, she squirted some of the dermatologist's lotion onto my hand, and when I rubbed it in it stuck there and turned to chalk. In the meantime, she'd used it, too, so we both arrived in Philly with dry, chalk white hands. Civia said it looked like we'd painted ourselves with Wite-Out. Oh right, back to Penn. We did get to go for lunch, but considering Mother Nature slapped her head and realized it's January in Philadelphia, we didn't go exploring the campus for a great lunch. We stopped at Potbelly at Penn Tower, which was fine. I had soup. So.
That stuff you have to drink for an abdominal CT scan is abominable. It doesn't even have a name, it's just called that stuff (okay, pardon me, but "contrast" isn't a much better name). My stomach is still killing me, and I finished that horrible liquid about 10 hours ago. My laptop is resting on my lap, just below the gurgling of curses my poor, pissed off belly is hailing at me.
Dr. Fox came into the exam room, squeezed my shoulder in greeting as he entered, and sat down at the computer to log in. He asked us to hang on a minute, and then he grunted at the screen. He said something about having to change the language, and then grunted a bit more. I got nervous, thinking he was upset with my test results or something. Note to Dr. Fox: don't grunt near paranoid cancer patients. Finally he just moved us to the next exam room (my mother had appeared with us by this time). The first computer was not cooperating. Whew!
In the meantime, he did get an earful about how I was feeling, and learned that my extremities are worse rather than improved after decreasing my Xeloda dose. He said my official CT scan results would not be available for a couple days, that I should call on Monday to hear the findings. In the meantime, he could look at the pictures on the screen. He scrolled through them, and though I could see, I couldn't tell what was good or not good. He turned back to us and said my liver looks good. Then he decided to show us, so he pulled up August's CT scan to help us compare. In August the cancer was easy to see when he pointed it out, and it was pretty much all over. Today's scan showed very little visible cancer, I had to strain to see anything out of the ordinary, honestly.
So. Good news and bad news: the chemo is killing the cancer, but it's also harming me. But it's killing the cancer! But I still can't eat. But ... what a difference in the pictures! But, ouch, my stomach! Chemo, cancer, chemo, cancer. Score for chemo, that's for sure. Staying on it like this, though, is not an option. Right now, I take 7 days on and 7 days off. This is my off week. Now I'm getting a second off week, to hopefully improve my side effects. When I start again, I'll decrease again, from 6 pills a day to 5. I hope this works! If not, Dr. Fox says he'll just decrease by one more pill and try again.
My mom and Civia hugged me and looked thrilled about the good news. I'm oddly ambivalent, and can't figure out why. Do I no longer trust good news? I have to get over that, if it's true. After all, it's 2012! Anything can happen.
Sunday, January 15, 2012
Ouch
I didn't even see the truck that flattened me. It came out of nowhere, and here I am in bed again. Ken is suggesting I shouldn't go to Allison's All-South Jersey Band concert because I'll focus all the attention on myself when it should be on her. Which made me cry for the 300th time in the past 15 hours. I'm trying. I ate my favorite soup, and I went to the gym for an undelightful treadmill walk on this 28-degree day. Still, I'm so sick, and worse, so miserable. Jonah slept at Jacob's house last night, which was a blessing, but he wrote this for me at some point (grammar corrected because you know I can't tolerate misplaced apostrophes):
It Doesn't Matter, by Jonah Friedman
If you're really sick or you have a chance of life stopping, all that matters is if you have someone that cares. You do need someone to care if you are one of those sick ones like my mom. Ask yourself: Does anyone care? Think of your friends. Do they care? Think of your family. Do they care? Yes, they do, you will think, and that's all that matters. This is for my mom on a night when she was very sick, it's also the night it was written as a story for my mom.
That's the kind of thing my boys do to try to make me feel better, and it's so unfair to them. I still have my mom, and she's not going anywhere before I do, most likely. Why do these kids have to experience something this horrible?
I don't know why I'm suddenly this emotional, like it's brand new all over again, especially after Tuesday's post. Maybe because my physical symptoms are back so fast, or maybe because I shouldn't be reading the book I'm reading. (Sorry, Sharon, but I didn't expect quite so many parallels.) I have 20 minutes to shake it off. Allison slept at a friend's last night, and doesn't know about all of this. I don't want her to know. Her concert cannot be all about me, but I have to go. To thoroughly display my current state of mind: I have to go because what if it's the last one I'll get to experience?
It Doesn't Matter, by Jonah Friedman
If you're really sick or you have a chance of life stopping, all that matters is if you have someone that cares. You do need someone to care if you are one of those sick ones like my mom. Ask yourself: Does anyone care? Think of your friends. Do they care? Think of your family. Do they care? Yes, they do, you will think, and that's all that matters. This is for my mom on a night when she was very sick, it's also the night it was written as a story for my mom.
That's the kind of thing my boys do to try to make me feel better, and it's so unfair to them. I still have my mom, and she's not going anywhere before I do, most likely. Why do these kids have to experience something this horrible?
I don't know why I'm suddenly this emotional, like it's brand new all over again, especially after Tuesday's post. Maybe because my physical symptoms are back so fast, or maybe because I shouldn't be reading the book I'm reading. (Sorry, Sharon, but I didn't expect quite so many parallels.) I have 20 minutes to shake it off. Allison slept at a friend's last night, and doesn't know about all of this. I don't want her to know. Her concert cannot be all about me, but I have to go. To thoroughly display my current state of mind: I have to go because what if it's the last one I'll get to experience?
Tuesday, January 10, 2012
What to Think
I wrote this earlier, during my subbing assignment:
Twice in the past week people have said to me that they don't know how I function. They insist they'd be basket cases, confined to their beds. How do I get up and go to work and act normal? Well, obviously I still have choices, just like anyone would. Who would choose to spend whatever remaining time he or she has on Earth curled up in a ball, not experiencing it. I would not.
If you've spent time sick in bed, preparing mentally or even wishing for death, you understand the blessed relief it is to get up, shower, get the kids moving, and get out the door. When your muscles atrophy and you're tasked with gaining 10 pountds to erase the sallow, pale appearance that so truly unbecoming, a brisk walk in the sunshine makes you feel positively Herculean, and HEALTHY.
Certainly, I'm not 100% myself. Emotionally, I may be the same. Perhaps a bit calmer, but I'll never learn to avoid sweating the small stuff. Hitting a deer on the way to Florida made me briefly sad for the deer, and gave me good fodder for teasing Ken about killing Rudolph just before Christmas. On the other hand, you don't want to be in my vicinity if I can't find my keys.
Physically, I'm almost never free of the lump of nausea at the base of my throat. I can ignore it until I can't, and eating is still a chore. So what. Last year at this time my dog had died and I had a constant headache, between grief and the horrible sinus infection I couldn't shake. Which is worse? I think I suffered more last year. Again, again, I must reiterate how thrilled I am that 2011 is dead in the dust. I may still be stuck on chemo with my dry, awful, swollen hands and feet, but I hada fantastic birthday on Friday and I've already had refreshingly good news: my monthly chemo bill was cut by 80%, thanks to the manufacturer picking up the bulk. I'll now pay $80, instead of $300. Still a day of subbing, but at least not a car payment! I need to call the ACS because they have been trying to reach me, perhaps with assistance for more bills. And on Sunday Ken and I earned a "free" cruise for sitting through a seminar about a vacation club that offes deep discounts to travelers who can afford to pay $9000 for the privilege. Luckily, we were quickly pegged as "not candidates" and sent on our way with our voucher.
Today is my second consecutive day in the same 7th grade language arts classroom with the most amazing students ever to greet a sub. I don't even have to issue any reminders! Everyone is working, from the girl with the one purple sequined Ugg boot and one silver sequined Ugg boot, to the boy with hickeys all over his neck (ewww). I would have to choose to think about cancer with such characters in my midst. I would not.
Twice in the past week people have said to me that they don't know how I function. They insist they'd be basket cases, confined to their beds. How do I get up and go to work and act normal? Well, obviously I still have choices, just like anyone would. Who would choose to spend whatever remaining time he or she has on Earth curled up in a ball, not experiencing it. I would not.
If you've spent time sick in bed, preparing mentally or even wishing for death, you understand the blessed relief it is to get up, shower, get the kids moving, and get out the door. When your muscles atrophy and you're tasked with gaining 10 pountds to erase the sallow, pale appearance that so truly unbecoming, a brisk walk in the sunshine makes you feel positively Herculean, and HEALTHY.
Certainly, I'm not 100% myself. Emotionally, I may be the same. Perhaps a bit calmer, but I'll never learn to avoid sweating the small stuff. Hitting a deer on the way to Florida made me briefly sad for the deer, and gave me good fodder for teasing Ken about killing Rudolph just before Christmas. On the other hand, you don't want to be in my vicinity if I can't find my keys.
Physically, I'm almost never free of the lump of nausea at the base of my throat. I can ignore it until I can't, and eating is still a chore. So what. Last year at this time my dog had died and I had a constant headache, between grief and the horrible sinus infection I couldn't shake. Which is worse? I think I suffered more last year. Again, again, I must reiterate how thrilled I am that 2011 is dead in the dust. I may still be stuck on chemo with my dry, awful, swollen hands and feet, but I hada fantastic birthday on Friday and I've already had refreshingly good news: my monthly chemo bill was cut by 80%, thanks to the manufacturer picking up the bulk. I'll now pay $80, instead of $300. Still a day of subbing, but at least not a car payment! I need to call the ACS because they have been trying to reach me, perhaps with assistance for more bills. And on Sunday Ken and I earned a "free" cruise for sitting through a seminar about a vacation club that offes deep discounts to travelers who can afford to pay $9000 for the privilege. Luckily, we were quickly pegged as "not candidates" and sent on our way with our voucher.
Today is my second consecutive day in the same 7th grade language arts classroom with the most amazing students ever to greet a sub. I don't even have to issue any reminders! Everyone is working, from the girl with the one purple sequined Ugg boot and one silver sequined Ugg boot, to the boy with hickeys all over his neck (ewww). I would have to choose to think about cancer with such characters in my midst. I would not.
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