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.
Tuesday, January 10, 2012
Friday, December 30, 2011
Update
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.
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.
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.
Tuesday, November 8, 2011
Not Missing
My teaching assignment ends in two weeks. I've spent much of this fall hoping I would make it through, and considering the relief I would feel at the end. But it won't be relief. I'm sad to leave now that I feel so well. I love showing passion and energy in the classroom, and now that I have enough to share and spare, what am I going to do padding around my house? Oh yes, I forget. It's Prednisone energy. And as I slowly wean from it while increasing my dosage of the Xeloda (the chemo), I wait for a sad descent into the corner of my bed. That's pessimistic. I just changed my mind, I'm not going to sit and wait for that!
However, I have no answers at the moment. I saw Dr. Fox on the 25th, and he said the blood tests taken that day were largely meaningless. On the other hand, the ones I will have taken on November 29 will provide crucial information. You know what. I think they'll be okay, because he does.
Here's what I didn't miss recently: I didn't miss Jonah's grand slam a couple weeks ago during the last fall ball game of the season. I didn't miss trick-or-treating with neighbors and friends. I didn't miss having a great Mexican dinner with Civia last week. I didn't miss spending quality time with my in-laws during their visit. I didn't miss the NJ State Band Competition up in Union on Saturday, where I didn't miss Lenape Marching Band's winning program (third year as state champs, and they SO deserve it!). I didn't miss Jen Glass's bat mitzvah, and she did a beautiful job. I didn't miss the wonderful reception, spending time with wonderful family. I didn't miss taking Jonah on a date last night. I hate missing stuff.
Here's one more thing we won't miss: the cruise! We're going, and now it's getting very exciting to contemplate. Thanks, Michael and Ellen, for adding to that!
Here we are on Saturday, soon after Allison's performance with the marching band. You can tell how great the kids did just by our smiles!
However, I have no answers at the moment. I saw Dr. Fox on the 25th, and he said the blood tests taken that day were largely meaningless. On the other hand, the ones I will have taken on November 29 will provide crucial information. You know what. I think they'll be okay, because he does.
Here's what I didn't miss recently: I didn't miss Jonah's grand slam a couple weeks ago during the last fall ball game of the season. I didn't miss trick-or-treating with neighbors and friends. I didn't miss having a great Mexican dinner with Civia last week. I didn't miss spending quality time with my in-laws during their visit. I didn't miss the NJ State Band Competition up in Union on Saturday, where I didn't miss Lenape Marching Band's winning program (third year as state champs, and they SO deserve it!). I didn't miss Jen Glass's bat mitzvah, and she did a beautiful job. I didn't miss the wonderful reception, spending time with wonderful family. I didn't miss taking Jonah on a date last night. I hate missing stuff.
Here's one more thing we won't miss: the cruise! We're going, and now it's getting very exciting to contemplate. Thanks, Michael and Ellen, for adding to that!
Here we are on Saturday, soon after Allison's performance with the marching band. You can tell how great the kids did just by our smiles!
Sunday, October 23, 2011
If There's Anything I Can Do
Today I walked 5 miles for the Making Strides Walk, which benefits the American Cancer Society. I did not think I would make the whole 5 miles on my bad hip, but I did it, slowly, my own way, with great friends my sister, and a most beautiful sunshine. Last year I did this same walk much faster, with much less effort. This year I needed to get home for some Advil. Last year I raised money. This year I made no attempt to do so. I could've, for sure. People want to help and don't know what to do. I'm at a loss for what these people can do. I get phone numbers from people I like very much but don't know so well, who want to know what they can do.
What everyone needs to know first and foremost is that I deeply appreciate every hug I get. That seems to be the best thing to do most of the time. I've become very huggy. It's a wonderful connection that stays with me for awhile. I also apparently like talking endlessly if you have time to listen and I'm on Prednisone. Most of the time, I need to do anything I can do. Or at least try! If there's something you think to do because you see a need, that's amazing. I was sick one morning at work and a teacher gave up her prep to stay with my kids while I napped in the nurse's office. She simply came into my classroom and sent me away. My friends showed up for two days while I was at work and cleaned my house, which was desperately dirty. The day I came home to fresh smells and order, I was completely overwhelmed. But you have to know someone very well before you can show up and clean their house.
Now I have a few others wanting to pay a service to clean, which is also wonderful. Just like the plentiful meals we receive. And yet on one hand it feels strange. I would certainly have the same thoughts if any of these beautiful women were sick, I'd want to do something special. I should just gratefully accept it, and I will. I believe I'm feeling guilty for receiving a bountiful of riches from amazing and sincere people while there must be many others suffering in silence. Why am I so lucky and blessed, and how can we make sure everyone gets those offers of "anything I can do?" (I really appreciate those offers, by the way, I never take them as empty expressions.) This is what I think about. Some people are more private than I am, perhaps suffering more. Are they getting all the good care and concern? We all keep our eyes open for anyone who needs a good deed. I hope I notice more often after this whole experience. I think all I can do is to pay it forward.
As for how we're doing in the Friedman Family Clinic. Ken's shoulder surgery went well, and if you see him, tell him to wear his sling all the time. I think he's doing too much. I'm feeling mostly well. I have enough energy, certainly, and a huge appetite, which I feed with abandon. The chemo has a minimal effect on me compared to the Prednisone. I'm having continuing back and hip problems. I lost a lot of myself physically while lying in bed most of the time for more than a month. With Prednisone, I stood up to face the world again, and promptly bent wrong. Ouch! The kids are doing great. You should see Allison's trombone solo in the marching band. We're so proud of her! Jason got his braces taken off and he is so handsome. We're proud of him for being an incredible help to Ken during his worst days. Jonah is doing well and has agreed to join a support group for kids with parents suffering from cancer. I think it starts this Thursday, and there will be a concurrent parent group. He's also quite a pitcher at baseball! On a sad note, I have a couple extraneous, estranged family members who need to leave this blog. Good-bye, Mrs. Abrams and Mrs. Fine.
Shout out to Renee, who checks everyday to see if I've written anything. Email me tonight or tomorrow! Shout out to Scott, whose remission is on my mind lately. You always make me smile!
Shout out to Barb, because she's Barb!
What everyone needs to know first and foremost is that I deeply appreciate every hug I get. That seems to be the best thing to do most of the time. I've become very huggy. It's a wonderful connection that stays with me for awhile. I also apparently like talking endlessly if you have time to listen and I'm on Prednisone. Most of the time, I need to do anything I can do. Or at least try! If there's something you think to do because you see a need, that's amazing. I was sick one morning at work and a teacher gave up her prep to stay with my kids while I napped in the nurse's office. She simply came into my classroom and sent me away. My friends showed up for two days while I was at work and cleaned my house, which was desperately dirty. The day I came home to fresh smells and order, I was completely overwhelmed. But you have to know someone very well before you can show up and clean their house.
Now I have a few others wanting to pay a service to clean, which is also wonderful. Just like the plentiful meals we receive. And yet on one hand it feels strange. I would certainly have the same thoughts if any of these beautiful women were sick, I'd want to do something special. I should just gratefully accept it, and I will. I believe I'm feeling guilty for receiving a bountiful of riches from amazing and sincere people while there must be many others suffering in silence. Why am I so lucky and blessed, and how can we make sure everyone gets those offers of "anything I can do?" (I really appreciate those offers, by the way, I never take them as empty expressions.) This is what I think about. Some people are more private than I am, perhaps suffering more. Are they getting all the good care and concern? We all keep our eyes open for anyone who needs a good deed. I hope I notice more often after this whole experience. I think all I can do is to pay it forward.
As for how we're doing in the Friedman Family Clinic. Ken's shoulder surgery went well, and if you see him, tell him to wear his sling all the time. I think he's doing too much. I'm feeling mostly well. I have enough energy, certainly, and a huge appetite, which I feed with abandon. The chemo has a minimal effect on me compared to the Prednisone. I'm having continuing back and hip problems. I lost a lot of myself physically while lying in bed most of the time for more than a month. With Prednisone, I stood up to face the world again, and promptly bent wrong. Ouch! The kids are doing great. You should see Allison's trombone solo in the marching band. We're so proud of her! Jason got his braces taken off and he is so handsome. We're proud of him for being an incredible help to Ken during his worst days. Jonah is doing well and has agreed to join a support group for kids with parents suffering from cancer. I think it starts this Thursday, and there will be a concurrent parent group. He's also quite a pitcher at baseball! On a sad note, I have a couple extraneous, estranged family members who need to leave this blog. Good-bye, Mrs. Abrams and Mrs. Fine.
Shout out to Renee, who checks everyday to see if I've written anything. Email me tonight or tomorrow! Shout out to Scott, whose remission is on my mind lately. You always make me smile!
Shout out to Barb, because she's Barb!
Sunday, October 9, 2011
Saying it Once
I've pretty much discarded the whole point to the blog, because I don't write nearly enough and I end up telling the same news repeatedly. Somehow I've got to get more information across here, because I'm not getting enough information across. I'm frustrated and miserable, and if I could just do this more often it would clear my head just enough, I think.
Cancer is shitty. Livers can be killers. I could write a whole lot about vomit, as I have become so adept at the act. I wonder how much I could write about curling up in one corner of my bed, staring at the same walls as the light changes through the day, with the computer eight feet away, so far, the bathroom a distant and necessary goal. When I'm not dehydrated. There's agony, and it's amazing that a human in 2011 could simply be left like that. Can't they just keep me in the hospital sometimes and drug me enough to sleep peacefully?
Anyway, that's all the past for the moment. I'll start at the beginning.
I was off chemo for a month, waiting to begin the oral chemo. The break wasn't pleasant, as my liver became more palpable. Literally, I could palpate my liver, and I could practically feel it in my rib cage, in my bones. Nausea was constant and then it progressed beyond just that. I made it to work everyday during all this time and taught first grade, and I can't tell you how. Mints, diet coke, ginger ale, and thank goodness for a sink in my classroom. I could hold it together for the kids and then get home and sleep until the next morning. Then it got worse. On Friday the 30th (the same day I finally started the oral chemo) I walked into a wall at school and left early. By Sunday I was begging to go to the hospital, but Ken was hesitant. We finally talked to an oncologist that night, who suggested I might just want to wait until the next morning, when I could go to Penn for fluids. Unfortunately, I woke the next morning, considered all the prep work I'd have to do for a sub, and went to school instead of a hospital. That was stupid. I did last half the day, somehow, but that wasn't the greatest three hours of learning for 17 first graders. Thank goodness they're great, and we have a pretty good auto pilot.
Penn, what a relief. I got my fluids and strong ativan, and blessedly, prednisone. Prednisone makes such a huge difference, I was fully ready to get back to the kids pretty quickly. And here I am, functioning to a degree I would've found unimaginable last weekend. These ups and downs are crazy, but at least there are ups.
My back hurts, and my left leg isn't acting right. I can't figure it out, and it's more annoying than anything else. I'll certainly take it after what I dealt with last week. I hope it clears up soon. On Wednesday Ken is going in for surgery on his shoulder, with a tough recovery. I'm pretty stressed about that.
So far 2011 has been one enduring nightmare. With Ken recovering from shoulder surgery and me in this condition, should we take a cruise in December? We booked it in March, and we were so excited to take such a big family vacation. Now, we're just not optimistic about anything good happening in 2011 (see Phillies post season for more info). Ken will be in pain, I'll be in a corner of a bed, and it'll rain the whole time. We have trip insurance. Should we push the cruise back to March or April, or just try to go for it in December?
Cancer is shitty. Livers can be killers. I could write a whole lot about vomit, as I have become so adept at the act. I wonder how much I could write about curling up in one corner of my bed, staring at the same walls as the light changes through the day, with the computer eight feet away, so far, the bathroom a distant and necessary goal. When I'm not dehydrated. There's agony, and it's amazing that a human in 2011 could simply be left like that. Can't they just keep me in the hospital sometimes and drug me enough to sleep peacefully?
Anyway, that's all the past for the moment. I'll start at the beginning.
I was off chemo for a month, waiting to begin the oral chemo. The break wasn't pleasant, as my liver became more palpable. Literally, I could palpate my liver, and I could practically feel it in my rib cage, in my bones. Nausea was constant and then it progressed beyond just that. I made it to work everyday during all this time and taught first grade, and I can't tell you how. Mints, diet coke, ginger ale, and thank goodness for a sink in my classroom. I could hold it together for the kids and then get home and sleep until the next morning. Then it got worse. On Friday the 30th (the same day I finally started the oral chemo) I walked into a wall at school and left early. By Sunday I was begging to go to the hospital, but Ken was hesitant. We finally talked to an oncologist that night, who suggested I might just want to wait until the next morning, when I could go to Penn for fluids. Unfortunately, I woke the next morning, considered all the prep work I'd have to do for a sub, and went to school instead of a hospital. That was stupid. I did last half the day, somehow, but that wasn't the greatest three hours of learning for 17 first graders. Thank goodness they're great, and we have a pretty good auto pilot.
Penn, what a relief. I got my fluids and strong ativan, and blessedly, prednisone. Prednisone makes such a huge difference, I was fully ready to get back to the kids pretty quickly. And here I am, functioning to a degree I would've found unimaginable last weekend. These ups and downs are crazy, but at least there are ups.
My back hurts, and my left leg isn't acting right. I can't figure it out, and it's more annoying than anything else. I'll certainly take it after what I dealt with last week. I hope it clears up soon. On Wednesday Ken is going in for surgery on his shoulder, with a tough recovery. I'm pretty stressed about that.
So far 2011 has been one enduring nightmare. With Ken recovering from shoulder surgery and me in this condition, should we take a cruise in December? We booked it in March, and we were so excited to take such a big family vacation. Now, we're just not optimistic about anything good happening in 2011 (see Phillies post season for more info). Ken will be in pain, I'll be in a corner of a bed, and it'll rain the whole time. We have trip insurance. Should we push the cruise back to March or April, or just try to go for it in December?
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