I wish it could always be December 30th when I go to Penn. I actually got out of there in 90 minutes today, including the blood draw, the consultation, and the port flush. That's a record! There were many available seats in the waiting room, and no wait at all for a chemo suite (I have to go to one to have the flush done).
Dr. Fox said I could have a CT scan, but that my scans don't read well because my liver is weird. He said he'd show me, but he didn't get the chance (he's always darting about while Lorelei leads most of the appointment). I asked how he'd ever determine if I make it to remission if my scans can't be read accurately, and he said that would be based on blood tests. So I asked about my blood tests, and he told me my numbers had gone down quite a bit and he was pleased with that. I asked if there was a goal number, and he said no, that he just didn't want the numbers going up. So I still don't really understand anything. I can either research or trust him. I'll decide later. I am going to have the CT scan, because surely it's got to make some difference in what we know. I'll get results for that when I return to Fox on January 30th. Hopefully they'll offer some information.
As for the chemo, Dr. Fox said the only way to cure my hands and feet is to reduce the dosage. So instead of taking 4000 mg a day I'll be taking 3000 mg a day. I'm off chemo until next Friday, so I'll have to wait awhile to see how that works. In the meantime, he had nothing to give me to provide relief. Except for financial relief: my copay for the chemo is $300 a month, and Fox gave me a form for the manufacturer to offer assistance. I hope we get the assistance!
I've only gained one pound since last month. It feels like more. I think my weight is good right now, and I'm glad the prednisone face and belly swelling is reducing.
Friday, December 30, 2011
Thursday, December 29, 2011
Cruise!
We did it! We went on vacation, and returned relatively unscathed. I was only a little worried about not feeling well, because I was armed with prednisone. In the end, I never took it. I took compazine a couple times and wore my vomit band (anti-nausea wristband, whatever) most of the time. I didn't forget to bring along my Xeloda (chemo pills), though originally I thought I did.
We left the pets, got in the car, and drove until we hit a deer in southern Virginia. That part wasn't planned, and my car was scathed, but totally driveable. So we arrived at my dad and Libby's about 1/2 hour later than planned. My daughter can be a speed devil. You know what that means? She's my kid, of course. She drove for a few hours in the deep south.
It's so incredible to get onboard the ship. Suddenly it feels like you can brush away all the stress of planning and packing and transporting, and let other people take care of everything. It's a huge relief. Everything becomes a matter of what to wear, and the choices are narrow because how much can you pack? I'm a frugal packer, so in my case, not much.
The ship itself was lovely, our room was lovely until our lovely children broke the lock to the door (they had their own room, but admittedly, their interior cabin was not so lovely as our balcony stateroom). We had a lovely time wandering around, waiting (and waiting and waiting) to leave Fort Lauderdale. Women line danced, drinks were offered, the pool deck band played salsa music, Jason texted lovely Laura. Allison failed to notice there were girls her age on the ship, because she was repeatedly approached by the boys. Jonah was reticent about the entire atmosphere.
At dinner that night we met the Molkaras, our table mates. Who'd have thought we would laugh so much and end up closing down the dining room every night! What a great family. And now great new friends.
It was the third day before we arrived at our first port, Grand Cayman. That's where Ken and the boys went helmet diving, and Allison rented a kayak. I sat in the shade. Allison and I shopped, and I paid a guy to break open a coconut for me. Delicious!
The next day, we woke up to rain and wind in Jamaica. The captain determined conditions were unsafe for leaving the ship. Even after the gorgeous rainbow and the following sunshine, we couldn't go anywhere. Finally the captain said it wouldn't happen, sorry, and we left Jamaica without setting anything but our eyes on it. Allison was sad. It turned out to be a good day, though, filled with onboard activities. Also, Jonah finally decided to eat the food.
Labadee, Haiti was our last stop. Once again I sat in the shade to read, Ken in the boys swam in the cool, clear water. Allison and I rented a jet ski, she was my passenger. Jet skiing is my favorite water activity, and I was eager to share the experience with Allison. We traveled in a line with other jet skiers, on a tour with a guide. At one point we hopped off the machines to wade around in the water, while Haitian kayak hawkers hawked their trinkets aggressively. After saying no thank you repeatedly, I found myself in the awkward and embarrassing position of needing their help: my arms are weak, and felt tired after controlling the wave runner for 40 minutes. I could not climb back on the jet ski. At one point I got almost all the way on, only to slip off and submerge in the water again. Finally, a kayaker grabbed my arm to assist, and I made it. The other jet skiers looked at me curiously, but they had to be trying not to laugh. The next segment of the ride was over waves, where I somehow managed to lose my sunglasses, bite my tongue, and bump my nose. But there was no way I was falling into that water again! In the end, Allison loved jet skiing. I need to go to the gym.
The trip was too short. By the time we left after the sixth night, we were planning our next cruise. Shooting for summer of 2013. Who's in?
I'll not share the Florida portion of the trip, it was a nice visit with relatives. So, in the general spirit of this blog, I'll complain about cancer; specifically, my hands and feet. Help! They hurt. My hands are swollen and red , dry and itchy. My finger tips are numb. My feet aren't much better. As far as chemo side effects go, I'll take it! But you know? I'm sick of chemo. It's been more than six months, and I really would like to know how I'm doing. The stuff I have to drink for a CT scan is detestable, but at this point I'd like a CT scan. I haven't had one since September. I'm seeing Dr. Fox tomorrow, perhaps I can beg. Or perhaps at least he can provide a script for my hands and feet. My fingerprints are just about gone.
Without the prednisone, my appetite is shrinking again. I'm not horribly nauseous, just not hungry. I really saw the decrease on the ship, where I could take as much food as I wanted. The first couple days, I ATE. By the end, I barely ate. I also felt increasingly exhausted as I should've probably felt refreshed. I don't want to end up like I was in the summer. It's my big fear at this point, and yet here I am in bed all day, and I've only eaten two waffles. I'm not sick, I'm not. I'm not.
We left the pets, got in the car, and drove until we hit a deer in southern Virginia. That part wasn't planned, and my car was scathed, but totally driveable. So we arrived at my dad and Libby's about 1/2 hour later than planned. My daughter can be a speed devil. You know what that means? She's my kid, of course. She drove for a few hours in the deep south.
It's so incredible to get onboard the ship. Suddenly it feels like you can brush away all the stress of planning and packing and transporting, and let other people take care of everything. It's a huge relief. Everything becomes a matter of what to wear, and the choices are narrow because how much can you pack? I'm a frugal packer, so in my case, not much.
The ship itself was lovely, our room was lovely until our lovely children broke the lock to the door (they had their own room, but admittedly, their interior cabin was not so lovely as our balcony stateroom). We had a lovely time wandering around, waiting (and waiting and waiting) to leave Fort Lauderdale. Women line danced, drinks were offered, the pool deck band played salsa music, Jason texted lovely Laura. Allison failed to notice there were girls her age on the ship, because she was repeatedly approached by the boys. Jonah was reticent about the entire atmosphere.
At dinner that night we met the Molkaras, our table mates. Who'd have thought we would laugh so much and end up closing down the dining room every night! What a great family. And now great new friends.
It was the third day before we arrived at our first port, Grand Cayman. That's where Ken and the boys went helmet diving, and Allison rented a kayak. I sat in the shade. Allison and I shopped, and I paid a guy to break open a coconut for me. Delicious!
The next day, we woke up to rain and wind in Jamaica. The captain determined conditions were unsafe for leaving the ship. Even after the gorgeous rainbow and the following sunshine, we couldn't go anywhere. Finally the captain said it wouldn't happen, sorry, and we left Jamaica without setting anything but our eyes on it. Allison was sad. It turned out to be a good day, though, filled with onboard activities. Also, Jonah finally decided to eat the food.
Labadee, Haiti was our last stop. Once again I sat in the shade to read, Ken in the boys swam in the cool, clear water. Allison and I rented a jet ski, she was my passenger. Jet skiing is my favorite water activity, and I was eager to share the experience with Allison. We traveled in a line with other jet skiers, on a tour with a guide. At one point we hopped off the machines to wade around in the water, while Haitian kayak hawkers hawked their trinkets aggressively. After saying no thank you repeatedly, I found myself in the awkward and embarrassing position of needing their help: my arms are weak, and felt tired after controlling the wave runner for 40 minutes. I could not climb back on the jet ski. At one point I got almost all the way on, only to slip off and submerge in the water again. Finally, a kayaker grabbed my arm to assist, and I made it. The other jet skiers looked at me curiously, but they had to be trying not to laugh. The next segment of the ride was over waves, where I somehow managed to lose my sunglasses, bite my tongue, and bump my nose. But there was no way I was falling into that water again! In the end, Allison loved jet skiing. I need to go to the gym.
The trip was too short. By the time we left after the sixth night, we were planning our next cruise. Shooting for summer of 2013. Who's in?
I'll not share the Florida portion of the trip, it was a nice visit with relatives. So, in the general spirit of this blog, I'll complain about cancer; specifically, my hands and feet. Help! They hurt. My hands are swollen and red , dry and itchy. My finger tips are numb. My feet aren't much better. As far as chemo side effects go, I'll take it! But you know? I'm sick of chemo. It's been more than six months, and I really would like to know how I'm doing. The stuff I have to drink for a CT scan is detestable, but at this point I'd like a CT scan. I haven't had one since September. I'm seeing Dr. Fox tomorrow, perhaps I can beg. Or perhaps at least he can provide a script for my hands and feet. My fingerprints are just about gone.
Without the prednisone, my appetite is shrinking again. I'm not horribly nauseous, just not hungry. I really saw the decrease on the ship, where I could take as much food as I wanted. The first couple days, I ATE. By the end, I barely ate. I also felt increasingly exhausted as I should've probably felt refreshed. I don't want to end up like I was in the summer. It's my big fear at this point, and yet here I am in bed all day, and I've only eaten two waffles. I'm not sick, I'm not. I'm not.
Sunday, December 4, 2011
Diagnosis: paranoid hypochondria
I laugh at cancer. I've got this morbid sense of humor that can just kill a room full of happy people. I mean to be funny, but it's not funny, and my friends get this strange look when we're all cracking up and I add something like, "It's a good thing I'll miss that!" Then there's this uncomfortable moment when everyone has to either laugh it off or remember I probably will miss whatever funny thing will happen in some distant future without me. I want the laughing to continue, but the filter hardly ever works between my brain and my mouth and I can't take back the stupid words.
Yesterday the words led to a big talk with Ken, and I cried as he described our days as empty nesters and how life will be then. I interrupted to remind him it won't be us, it will be him. Then we got into that uncomfortable silence for a minute. He really believes we'll have those days, and we'll celebrate a 30th anniversary someday. Or does he? How does he cope? Apparently he calls Dr. Fox. Ken admitted yesterday he's had numerous phone conversations with him about my future, which is "precarious," and my treatments. Ken doesn't listen too much to the word precarious, which of course is the one that gets stuck in my head. He hears the positive. He hears "remission" and "could live 10-20 years" and "new treatments and advances all the time." Ken hangs onto that.
I don't feel like I'm dying. I feel good these days. I have this little feeling at the back of my throat. It's like a lump but not, it's the nausea, just staying there. It's not bad, it doesn't interfere with my day or my appetite. It's just there.
I went to the doctor on Tuesday. The bulk of my appointment was with Lorelei, the NP, who doesn't say much. She asks me a million questions and takes notes. Dr. Fox came in for a minute, felt around my liver and said he did not feel the tumor. He said it is amazing, the difference between now and June, when he could feel the tumor over most of my liver. I asked him about the blood tests, and he expected positive results. He hasn't called, so I'm going with the no news is good news approach. He said I don't need a CT scan at this point. Okay.
So why am I so worried? On the way to the appointment, I advised my mother not to expect good news. I thought it would be a bad visit, based on some symptoms. I'm still losing too much hair, for example. I've been itchy. I was certain I looked jaundiced on Tuesday morning. Are the blood tests really not showing that? Is the tumor that dramatically reduced in my liver, really? Fox was busy, he only spent a minute. How did he get so much out of that minute? Ken was thrilled, while I was skeptical. I wish I could be like Ken and accept every positive piece of information instead of dissecting and analyzing it. Optimism doesn't seem to be part of my DNA. Not pessimism, either. I'm such a strict realist, that could be what kills me in the end. Well, no, ha ha, the cancer will kill me in the end! Ha ha ... hum.
Yesterday the words led to a big talk with Ken, and I cried as he described our days as empty nesters and how life will be then. I interrupted to remind him it won't be us, it will be him. Then we got into that uncomfortable silence for a minute. He really believes we'll have those days, and we'll celebrate a 30th anniversary someday. Or does he? How does he cope? Apparently he calls Dr. Fox. Ken admitted yesterday he's had numerous phone conversations with him about my future, which is "precarious," and my treatments. Ken doesn't listen too much to the word precarious, which of course is the one that gets stuck in my head. He hears the positive. He hears "remission" and "could live 10-20 years" and "new treatments and advances all the time." Ken hangs onto that.
I don't feel like I'm dying. I feel good these days. I have this little feeling at the back of my throat. It's like a lump but not, it's the nausea, just staying there. It's not bad, it doesn't interfere with my day or my appetite. It's just there.
I went to the doctor on Tuesday. The bulk of my appointment was with Lorelei, the NP, who doesn't say much. She asks me a million questions and takes notes. Dr. Fox came in for a minute, felt around my liver and said he did not feel the tumor. He said it is amazing, the difference between now and June, when he could feel the tumor over most of my liver. I asked him about the blood tests, and he expected positive results. He hasn't called, so I'm going with the no news is good news approach. He said I don't need a CT scan at this point. Okay.
So why am I so worried? On the way to the appointment, I advised my mother not to expect good news. I thought it would be a bad visit, based on some symptoms. I'm still losing too much hair, for example. I've been itchy. I was certain I looked jaundiced on Tuesday morning. Are the blood tests really not showing that? Is the tumor that dramatically reduced in my liver, really? Fox was busy, he only spent a minute. How did he get so much out of that minute? Ken was thrilled, while I was skeptical. I wish I could be like Ken and accept every positive piece of information instead of dissecting and analyzing it. Optimism doesn't seem to be part of my DNA. Not pessimism, either. I'm such a strict realist, that could be what kills me in the end. Well, no, ha ha, the cancer will kill me in the end! Ha ha ... hum.
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