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.
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?
Wednesday, September 21, 2011
Lunch in a Dark Classroom with Tears and Food
Some days I have much to write, and then I get home and fall asleep. Some days I forget I have a blog, or a computer. Not in a literal sense. I get too overwhelmed by the failings of my body to write. And then I fall asleep. Sometimes I lie in my bed and instead of sleeping, I concentrate on all the foods of the world, and what my body might possibly consider tolerating. The answer always seems to macaroni and cheese, which I don't actually tolerate well at all. Which I know, so I give up and fall asleep. I wonder why last week my legs would move without pain, and this week they're resistant to it. It's easier if I just sleep.
Last night I went downstairs to dinner. Chinese food, which I tolerated in small servings. For the first time in a long time we were together, a family of five. Allison said I came down to milk the cancer attention. Sure, like I wouldn't have come down all those other nights, too, for that. Jonah figured that if I made it to the kitchen I was feeling normal and could do everything for him, like normal. Jason and Ken treated me like a guest. And when Ken and I disagreed about something minor, I realized he's been the solo person in charge for so long, he's not used to my voice in his ear anymore. Maybe I'm not a ghost, but I'm not as substantial as I was.
I worry so much now about whether I will ever get to be substantial again. I can't deal with anything. I forgot Jason's orthodontist appointment. It's not chemo brain, it's exhaustion. When I'm at work my brain works okay. Which means I can finally blog as an awake person. I'm a little optimistic for today, actually. My legs hurt less, and I ate with no trouble. I do see Dr. Fox on Friday. Finally. I haven't seen him since August 30, and considering I'm counting on him to save my life, that seems too long. I'll try to update soon, if I can stay awake.
Last night I went downstairs to dinner. Chinese food, which I tolerated in small servings. For the first time in a long time we were together, a family of five. Allison said I came down to milk the cancer attention. Sure, like I wouldn't have come down all those other nights, too, for that. Jonah figured that if I made it to the kitchen I was feeling normal and could do everything for him, like normal. Jason and Ken treated me like a guest. And when Ken and I disagreed about something minor, I realized he's been the solo person in charge for so long, he's not used to my voice in his ear anymore. Maybe I'm not a ghost, but I'm not as substantial as I was.
I worry so much now about whether I will ever get to be substantial again. I can't deal with anything. I forgot Jason's orthodontist appointment. It's not chemo brain, it's exhaustion. When I'm at work my brain works okay. Which means I can finally blog as an awake person. I'm a little optimistic for today, actually. My legs hurt less, and I ate with no trouble. I do see Dr. Fox on Friday. Finally. I haven't seen him since August 30, and considering I'm counting on him to save my life, that seems too long. I'll try to update soon, if I can stay awake.
Friday, September 2, 2011
A Far Distance to Go in Three Days
That hurricane was a dud for us, as I hope it was for you. We sat up late, anticipating every disaster on the forecasts, and ended up hiding in the basement for awhile, kind of like a campout. We finally went to sleep, wondering what kind of earth we'd awaken to find on Sunday.
The world was surprisingly calm on Sunday morning. But not my stomach. Oh no. Sicksleep went into double mode, probably because I'd had the audacity to keep chemo from stealing Saturday. I would pay that price dearly. Sunday and Monday were horrible days I hope never to repeat, so bad that by Tuesday I needed to head to Penn for IV drip to stave off dehydration. Mercifully, they also added Ativan, which is a nausea reliever as well as a sedative. The Ativan did its work well. However, just before I passed into oblivion, Dr. Fox and Lorelei came to visit. I tried so hard to focus on what they said. I could understand the words, but not what Dr. Fox was trying to tell me. I kept repeating, "Well, that's good, right? That's good?" And Dr. Fox wasn't specifically answering that, but instead telling me more. I suppose he's used to talking to a functional brain, and I didn't have one at that moment. At the end, this is what I finally understood:
The first time I had my CT scan, on June 12, the cancer was so involved in my liver, and my surrounding lymph nodes were so swollen with it, the contrast dye could not seep past it to fill the remainder of my abdomen. Therefore, that scan did not show a complete picture. Now, my lymph nodes are significantly shrunk, as are the tumors, so the contrast had no trouble reaching all areas of my abdomen. Obviously this is a huge positive result, and yes drugged Michelle, that's good, right. Dr. Fox just wanted to let me know that he now wants another CT scan in a month, so he can compare two complete scans. All I wanted to know was whether I could still switch to oral chemo, or if I would be forced to endure Ixabepillone for another cycle. Somehow I failed to get that answer.
The hydrated and improved me/I was going to return to Penn on Wednesday for my scheduled appointment, but it seemed foolish when I had just seen Dr. Fox the previous day. I talked to the scheduler about it, and we agreed. She left a message for Lorelei, who sounded exhausted when she reached me hours later. Not only that, but Lorelei was also unclear about the chemo switch. She would need to discuss it with Dr. Fox the next morning. Which was when I posted to Facebook that I would update the next evening. Unfortunately, somehow I missed Lorelei's Thursday message, and had nothing to report last night.
I finally got the news from a nurse this afternoon, just as my father and Libby were entering my house, fresh from Florida. The nurse told me, drum roll, I AM switching to oral chemo! The prescription is ready to be filled, but I should not fill it until next week when I talk to Lorelei. I will take it 7 days, and then skip it 7 days. I don't return to Penn until later this month. Thank goodness! This is not just about the chemo, either. I've been in the classroom much of this week, and I can't express how excited I am about this new school year, and new 6-year-olds. This chemo allows me that side of my life. It returns my weekends to me, my life, my choices.
So many people pray for me, it's extremely humbling. I have to believe that all these prayers are floating along the right passages to make a positive difference. You're all so filled with love and kindness, with such generous spirits, your prayers may be riding on a faster wave. I'm lucky to have you on my side. So extremely lucky.
The world was surprisingly calm on Sunday morning. But not my stomach. Oh no. Sicksleep went into double mode, probably because I'd had the audacity to keep chemo from stealing Saturday. I would pay that price dearly. Sunday and Monday were horrible days I hope never to repeat, so bad that by Tuesday I needed to head to Penn for IV drip to stave off dehydration. Mercifully, they also added Ativan, which is a nausea reliever as well as a sedative. The Ativan did its work well. However, just before I passed into oblivion, Dr. Fox and Lorelei came to visit. I tried so hard to focus on what they said. I could understand the words, but not what Dr. Fox was trying to tell me. I kept repeating, "Well, that's good, right? That's good?" And Dr. Fox wasn't specifically answering that, but instead telling me more. I suppose he's used to talking to a functional brain, and I didn't have one at that moment. At the end, this is what I finally understood:
The first time I had my CT scan, on June 12, the cancer was so involved in my liver, and my surrounding lymph nodes were so swollen with it, the contrast dye could not seep past it to fill the remainder of my abdomen. Therefore, that scan did not show a complete picture. Now, my lymph nodes are significantly shrunk, as are the tumors, so the contrast had no trouble reaching all areas of my abdomen. Obviously this is a huge positive result, and yes drugged Michelle, that's good, right. Dr. Fox just wanted to let me know that he now wants another CT scan in a month, so he can compare two complete scans. All I wanted to know was whether I could still switch to oral chemo, or if I would be forced to endure Ixabepillone for another cycle. Somehow I failed to get that answer.
The hydrated and improved me/I was going to return to Penn on Wednesday for my scheduled appointment, but it seemed foolish when I had just seen Dr. Fox the previous day. I talked to the scheduler about it, and we agreed. She left a message for Lorelei, who sounded exhausted when she reached me hours later. Not only that, but Lorelei was also unclear about the chemo switch. She would need to discuss it with Dr. Fox the next morning. Which was when I posted to Facebook that I would update the next evening. Unfortunately, somehow I missed Lorelei's Thursday message, and had nothing to report last night.
I finally got the news from a nurse this afternoon, just as my father and Libby were entering my house, fresh from Florida. The nurse told me, drum roll, I AM switching to oral chemo! The prescription is ready to be filled, but I should not fill it until next week when I talk to Lorelei. I will take it 7 days, and then skip it 7 days. I don't return to Penn until later this month. Thank goodness! This is not just about the chemo, either. I've been in the classroom much of this week, and I can't express how excited I am about this new school year, and new 6-year-olds. This chemo allows me that side of my life. It returns my weekends to me, my life, my choices.
So many people pray for me, it's extremely humbling. I have to believe that all these prayers are floating along the right passages to make a positive difference. You're all so filled with love and kindness, with such generous spirits, your prayers may be riding on a faster wave. I'm lucky to have you on my side. So extremely lucky.
Saturday, August 27, 2011
A Sicksleep Outing
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!
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!
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.
Wednesday, July 27, 2011
Wet and Wild
Ken has been wanting a pool, and I've been resisting. I like having a yard, and I don't like grass-covered, wet feet traipsing across warp-able laminate flooring. The idea of floating alone in a lounge chair with a drink and a book is appealing, but I can imagine sinking my Kindle. Also, of course, the drink would be water.
Water, water, and more water. Drinking it serves the triple purpose of aiding the dry mouth brought on by the chemo, knocking out the constant thirst brought on by the prednisone, and flushing the chemo out of my system so my body can return to "normal" more quickly after each treatment. Officially, I need to drink four 20-ounce bottles a day. In reality, I drink closer to six or seven. I have a reddish colored bottle I purchased at Target nearly two years ago to reduce my carbon footprint, and I fill it repeatedly. If you have seen me in the past 6 weeks, you have seen the little handle of my bottle looped through my index finger on my left hand. It's American Express: I don't leave home without it. In my wallet, I carry a note from Dr. Fox advising any interested parties that I am required to have water with me at all times. Anyone who wouldn't let me would be violating the ADA. So ha, theater and museum attendants.
The drinking water part isn't bad at all. What's worrisome is when my supply runs low and the chance to refill is not imminent. I moderate, saving those last few sips for when they're desperately needed, and I feel my energy drain in those circumstances. It becomes a bit panicky, actually. I can become light-headed and clammy very quickly.
As a result of nausea, acid reflux, and my full-time task of sipping water, I burp loudly and frequently, with carefree abandon. It feels so good, I won't be apologizing for it. So fair warning: I am the wild and crazy burping girl.
During the extreme heat, I only made it to a pool one day, when Barb invited me on a Sunday afternoon. My water bottle warmed quickly, but Barb kept me quenched with iced green tea (or green iced tea?). We lounged in the built-in seats in her gorgeous new pool. Refreshing, but not as refreshing as tea with ice. Would I ever use a pool, or do I just need my water on the inside? Hard to say, but I can tell you I am relieved to be tabling the pool issue until next summer.
In the meantime, I've finished the 20-ounce bottle I started sipping at the beginning of this post. Burp. Now it's time for a refill. I had my third treatment of the second group today (6th treatment since beginning on June 15), and so I am flushing. Literally, figuratively, you name it. Water. Burp. Flush. Flush, chemo, flush. And don't bother me for the next two weeks. Pretty please!
Water, water, and more water. Drinking it serves the triple purpose of aiding the dry mouth brought on by the chemo, knocking out the constant thirst brought on by the prednisone, and flushing the chemo out of my system so my body can return to "normal" more quickly after each treatment. Officially, I need to drink four 20-ounce bottles a day. In reality, I drink closer to six or seven. I have a reddish colored bottle I purchased at Target nearly two years ago to reduce my carbon footprint, and I fill it repeatedly. If you have seen me in the past 6 weeks, you have seen the little handle of my bottle looped through my index finger on my left hand. It's American Express: I don't leave home without it. In my wallet, I carry a note from Dr. Fox advising any interested parties that I am required to have water with me at all times. Anyone who wouldn't let me would be violating the ADA. So ha, theater and museum attendants.
The drinking water part isn't bad at all. What's worrisome is when my supply runs low and the chance to refill is not imminent. I moderate, saving those last few sips for when they're desperately needed, and I feel my energy drain in those circumstances. It becomes a bit panicky, actually. I can become light-headed and clammy very quickly.
As a result of nausea, acid reflux, and my full-time task of sipping water, I burp loudly and frequently, with carefree abandon. It feels so good, I won't be apologizing for it. So fair warning: I am the wild and crazy burping girl.
During the extreme heat, I only made it to a pool one day, when Barb invited me on a Sunday afternoon. My water bottle warmed quickly, but Barb kept me quenched with iced green tea (or green iced tea?). We lounged in the built-in seats in her gorgeous new pool. Refreshing, but not as refreshing as tea with ice. Would I ever use a pool, or do I just need my water on the inside? Hard to say, but I can tell you I am relieved to be tabling the pool issue until next summer.
In the meantime, I've finished the 20-ounce bottle I started sipping at the beginning of this post. Burp. Now it's time for a refill. I had my third treatment of the second group today (6th treatment since beginning on June 15), and so I am flushing. Literally, figuratively, you name it. Water. Burp. Flush. Flush, chemo, flush. And don't bother me for the next two weeks. Pretty please!
Friday, July 22, 2011
Ding Ding, Round Two
I think I'm starting to get a handle on things, mentally and physically. Before, there seemed to be no rhyme or reason to anything. It was one horrifying experience or thought after another, with very little relief. Getting diagnosed the way I did threw everything into tumult. Suddenly I was a patient again, on chemo again, and that took a backseat to the morbidity that ensued. And then time, which has its way of healing any tortured soul, moves on and life begins to make sense again in its new way.
Now I know that if I drink 40 ounces of water during the first hour I'm awake, I won't be nauseous. I need to sleep most of the day on Friday. On Thursday food doesn't taste good, but I can run errands. It's not much, but it provides a system of planning for me. In yoga I've learned that I can make my breathing the center of my attention, and there's no space left for any other thought. I don't cry nearly so much anymore. I don't have any more answers, but I'm starting to accept that I'll do the best I can with the time I have left, and that's really all I can do. Strangely, despite my new lifestyle, which includes a lovely port protruding from my chest, life isn't really all that different day to day. I still shower and dress and spend time with my kids. I drive my car, go to the market, cross items off my to-do list. We still laugh during family dinners and the kids still fight or get along. I have to get school supplies and fill out the band camp forms and make sure Jonah has bus snacks. This is still my life, mundane and comforting.
I'm not a ghost. When I sign my name and write the date, it's not the last signature, nor the last date. I'm here, and it's good to be here.
Now I know that if I drink 40 ounces of water during the first hour I'm awake, I won't be nauseous. I need to sleep most of the day on Friday. On Thursday food doesn't taste good, but I can run errands. It's not much, but it provides a system of planning for me. In yoga I've learned that I can make my breathing the center of my attention, and there's no space left for any other thought. I don't cry nearly so much anymore. I don't have any more answers, but I'm starting to accept that I'll do the best I can with the time I have left, and that's really all I can do. Strangely, despite my new lifestyle, which includes a lovely port protruding from my chest, life isn't really all that different day to day. I still shower and dress and spend time with my kids. I drive my car, go to the market, cross items off my to-do list. We still laugh during family dinners and the kids still fight or get along. I have to get school supplies and fill out the band camp forms and make sure Jonah has bus snacks. This is still my life, mundane and comforting.
I'm not a ghost. When I sign my name and write the date, it's not the last signature, nor the last date. I'm here, and it's good to be here.
Monday, July 11, 2011
3:04 am
That's what time it says on the cable clock. I fell asleep at 11:30, and woke up at 12:20. Nausea will do that. Nausea has become my alarm clock, and it's not as precise or consistent as, say, a rooster. So here I sit, after watching Bill Maher and a cable movie, after about eight rounds of Sudoku on my Kindle, finally posting an update. And lucky you, it's about nausea.
How odd is it that this chemo I'm taking does not cause nausea, but the cancer I have does. One point for cancer. I should keep a tally. Chemo: why I don't get mosquito bites this summer. Cancer: why I've lost 6 pounds and can't seem to get them back. Chemo, cancer -- one poisons me, one kills me. A dichotomy, at last (I've always wanted to use that word in this blog).
I did not have chemo last Wednesday, so I assumed I'd feel pretty good by now. So stupid to have forgotten that cancer doesn't feel wonderful, either. It's 3:14 am, but Wawa and CVS are open if I must have ginger ale. Ken fell asleep on the sofa, so I'd have to sneak past him. He tries to do everything for me, and I do not want him to do this. I can make it to CVS and let the poor guy sleep.
Man, I have big plans for tomorrow, too: I need to get to the Verizon store, and to Whole Foods. Allison's safely ensconced in North Carolina and Jonah will be at daycamp. Lunch at Whole Foods is part of the agenda with Jason, who loves their pizza. Will we make it to Whole Foods? Must cancer muscle its way into every plan I make for the rest of my life? I'm not being dramatic.
* I wonder: Will I be able to teach first grade this fall? I have a contract to teach first grade until Thanksgiving, but at this point I'd give it a 30% chance of happening. First, the principal has to allow me a half day off most Wednesdays for chemo. Second, I have to be able to regularly summon the energy not only to get out of bed, but to TEACH FIRST GRADE. Third, my immune system has to remain strong enough for my oncologist to clear it.
* I wonder: Will we make it onto our planned and paid for cruise in December? Can it revolve around a chemo treatment? Will I go parasailing with a bald head? Will I choose to be photographed for formal night? Will I ever get out of the cabin, or have the energy to explore the ship? Which will be winning in December: chemo or cancer?
Nausea. It's not terrible at the moment. I bet I could sleep. My eyes are on the prize: the Verizon store, and Whole Foods with Jason.
How odd is it that this chemo I'm taking does not cause nausea, but the cancer I have does. One point for cancer. I should keep a tally. Chemo: why I don't get mosquito bites this summer. Cancer: why I've lost 6 pounds and can't seem to get them back. Chemo, cancer -- one poisons me, one kills me. A dichotomy, at last (I've always wanted to use that word in this blog).
I did not have chemo last Wednesday, so I assumed I'd feel pretty good by now. So stupid to have forgotten that cancer doesn't feel wonderful, either. It's 3:14 am, but Wawa and CVS are open if I must have ginger ale. Ken fell asleep on the sofa, so I'd have to sneak past him. He tries to do everything for me, and I do not want him to do this. I can make it to CVS and let the poor guy sleep.
Man, I have big plans for tomorrow, too: I need to get to the Verizon store, and to Whole Foods. Allison's safely ensconced in North Carolina and Jonah will be at daycamp. Lunch at Whole Foods is part of the agenda with Jason, who loves their pizza. Will we make it to Whole Foods? Must cancer muscle its way into every plan I make for the rest of my life? I'm not being dramatic.
* I wonder: Will I be able to teach first grade this fall? I have a contract to teach first grade until Thanksgiving, but at this point I'd give it a 30% chance of happening. First, the principal has to allow me a half day off most Wednesdays for chemo. Second, I have to be able to regularly summon the energy not only to get out of bed, but to TEACH FIRST GRADE. Third, my immune system has to remain strong enough for my oncologist to clear it.
* I wonder: Will we make it onto our planned and paid for cruise in December? Can it revolve around a chemo treatment? Will I go parasailing with a bald head? Will I choose to be photographed for formal night? Will I ever get out of the cabin, or have the energy to explore the ship? Which will be winning in December: chemo or cancer?
Nausea. It's not terrible at the moment. I bet I could sleep. My eyes are on the prize: the Verizon store, and Whole Foods with Jason.
Wednesday, June 29, 2011
Better ... what on earth does that mean?
What a challenge to explain or even comprehend what is considered good news in this situation, when everything is volatile, vulnerable, unknown (sorry I couldn't complete the alliteration).
It is a relief to know the chemo is working. An amazing relief. On June 14 Dr. Fox gave me 40% odds that this chemo would be effective at fighting the evil cells in my liver, and now he's certain of its success. In two weeks I've gone from far abnormally high bilirubin in my liver, to the discovery last week that my coloring was no longer looking jaundiced at all. This week he was eager to show me how the bilirubin numbers had changed, and that now my level is good normal. I had been watching my body's signs, and was pleased but not surprised. I feel better every single day. I feel stronger, I walk farther, I eat better. I can't feel the tumor lumps so strongly in my abdomen. I have exceeded all expectations. It buys me potential, which I need more than anything right now. If I do this, my body will do that. So far, so good.
However, it doesn't erase the fear. I have a good chance of going into remission, but that could last anywhere from 6 weeks to 10 years. It will be followed by another fight, then another, until my body gives up. At some point in the not distant enough future I will die of cancer, in pain. The upcoming milestones never leave me: Allison's high school graduation, Jason's high school graduation, Jonah's bar mitzvah, two college graduations, then another high school and another college. The big prizes: the weddings, the grandchildren.
How much can I effect with stellar treatment of my body and mind? I am so greedy for these milestones. I need a center, and I'm hoping I can conjure more faith. My logical brain could ruin this entire process if I can't get it to shut the hell up. I have lots of work to do.
Well, at this point improvement means a small surgery to insert a port to help with indefinite chemo treatments. Thank goodness! No more IVs. And I am confident we'll make it for our first milestone: a family cruise we've booked for December.
Shout outs to so many of you for so many things, including a special one for Ira's big bowl of candy that was picked at enough before reaching my house that it still makes me laugh. Thanks to all of you for the outpouring of love and support that always makes me/us feel so blessed. And to Ken, who has become the perfect breast cancer husband without even reading the book.
It is a relief to know the chemo is working. An amazing relief. On June 14 Dr. Fox gave me 40% odds that this chemo would be effective at fighting the evil cells in my liver, and now he's certain of its success. In two weeks I've gone from far abnormally high bilirubin in my liver, to the discovery last week that my coloring was no longer looking jaundiced at all. This week he was eager to show me how the bilirubin numbers had changed, and that now my level is good normal. I had been watching my body's signs, and was pleased but not surprised. I feel better every single day. I feel stronger, I walk farther, I eat better. I can't feel the tumor lumps so strongly in my abdomen. I have exceeded all expectations. It buys me potential, which I need more than anything right now. If I do this, my body will do that. So far, so good.
However, it doesn't erase the fear. I have a good chance of going into remission, but that could last anywhere from 6 weeks to 10 years. It will be followed by another fight, then another, until my body gives up. At some point in the not distant enough future I will die of cancer, in pain. The upcoming milestones never leave me: Allison's high school graduation, Jason's high school graduation, Jonah's bar mitzvah, two college graduations, then another high school and another college. The big prizes: the weddings, the grandchildren.
How much can I effect with stellar treatment of my body and mind? I am so greedy for these milestones. I need a center, and I'm hoping I can conjure more faith. My logical brain could ruin this entire process if I can't get it to shut the hell up. I have lots of work to do.
Well, at this point improvement means a small surgery to insert a port to help with indefinite chemo treatments. Thank goodness! No more IVs. And I am confident we'll make it for our first milestone: a family cruise we've booked for December.
Shout outs to so many of you for so many things, including a special one for Ira's big bowl of candy that was picked at enough before reaching my house that it still makes me laugh. Thanks to all of you for the outpouring of love and support that always makes me/us feel so blessed. And to Ken, who has become the perfect breast cancer husband without even reading the book.
Friday, June 24, 2011
A little more rational
I know my last post must've been unexpected by those who know me well, and I appreciate how so many of you managed to find a bright side to my dark thoughts. It actually helped, the whole thing. Dumping the damn feelings there, and then to have so many of you compliment my writing. I am feeling a bit more like me. Enough to get by. There's more to it, too. I understand at last that I'm not going to walk down the street today and collapse, dead. I have a tomorrow, and some sort of stake in the number of tomorrows after that.
I've been debating where to start my official story of this discovery. Some versions had me going back to January 1st, the opening battle of the war of 2011, when our beloved golden retriever Rudy suddenly died of cancer. Some had me accepting a wonderful long-term teaching assignment, thinking with a laugh that at least it wouldn't end with cancer, the way the last teaching assignment had.
The teaching assignment, then, which began unexpectedly on May 2. Oh, how wonderful to be back in first grade, but I didn't get the sort of start I needed to make things work optimally. I ended up with huge amounts of stress I probably mostly put upon myself. My back was coiled into layers of knots, my stomach started to hurt, my hair started to fall out. The stomach pain was strange, felt like bloating, like nothing I'd felt before. Amazing what stress could do. It's quite clear now that the stress precipitated the inevitable return and then served to hide the symptoms. I'd been to Dr. Fox in late March and was pronounced perfectly fine at that visit. G-d, what happened in less than three months.
On June 8 we celebrated Allison's confirmation from religious school, and then later we went to dinner to celebrate Jason's and Esther's birthdays. Jason had chosen to go to Chickie's and Pete's. I agreed for the sake of his birthday, but I do not enjoy seafood. My dinner was tasteless or worse, and I woke up in the middle of the night feeling horrible. Nothing alleviated the nausea, and I couldn't settle back to sleep. I had no appetite the next morning, and felt dizzy the whole day at work. Instead of my usual anal retentive preparation for the next day, I only stayed a half hour after the kids left, and fell asleep as soon as I arrived home. I awoke feeling no better. More tired, if possible, and I still couldn't eat. I missed the mandatory band parents' meeting, I couldn't get out of bed. And I felt extremely itchy, first in the middle, and then head to toe.
On June 10 I dragged myself off to school, figuring that somehow I'd summon the energy to walk all the way from my classroom to the main office. My energy had drained to the point that it was hard to talk and I was giving the kids worksheets to do (very unlike me, I like to be actively involved). I went home at lunchtime to nap. Allison woke me up with barely enough time to make it back to get my class. After school I hit the bed and did not emerge except to use the bathroom. Something was wrong with my urine. That's when I started to get concerned. I looked up my symptoms on the Internet, and discovered it could be hepatitis, gall stones, gallbladder ... or cancer. Ugh. I was too sick to worry too much about it. I went back to my curled up in a ball position, and missed the Larchmont Carnival. But! I did make it to see Super 8 that night with Jason. We'd been planning it for months and months, and we made it! I even stayed awake and enjoyed the movie.
June 11: Missed Jonah's baseball team's celebration of an excellent season. I laid in bed, trying to accept how I'd gone from Monday's avid cheerleader at the championship game to the unfed lump sweating in the sheets. I called the doctor, and was told that I needed to be seen and should consider a trip to the ER. Ken was more than ready, but not I. I had to get pictures of Jason leaving for his 8th grade dance. It was so important to me, I spent the entire day psyching myself for the 10-minute photo op. And I barely lasted 10 minutes. I swayed in the street, put on a great act for the other moms, and then couldn't handle it anymore. I would collapse. With an excuse of getting dinner ready, I rushed out of there.
That's when we went to the new Virtua hospital, where triage placed us behind every college aged moron with a cut foot. I saw the iCarly/Victorious special TWICE, and I wasn't even home with Jonah. I was starting to comprehend that I could have cancer, that I could die in the ER without being seen. Nobody noticed I was yellow until after the CT Scan ran hours later showed cancer chunks all over my liver. Then suddenly they couldn't understand how WE didn't see the jaundice.
The gastroenterologist who told me the news the next morning, after I'd been admitted to a beautiful room and become friendly with the nurse (who has an 8th grade son), was awkward and obviously unaccustomed to passing a death sentence to a youngish patient. He gawked and said the wrong things, then left. Then returned. Then left. Then returned. He did get me sedated quickly, though, because I was completely freaking out at the news, and by the sight of the nurse crying over my condition. My mom was with me, thank G-d, but I'd sent Ken home for a well-needed rest.
There was no reason for me to stay in the hospital. The IV sedation worked for a few hours, and I had a handful of scripts for nausea, itching, anxiety. I had to get to Dr. Fox. It wasn't like I would ever let Virtua treat me in 2 million years. So we went home, and found Barb and MJ waiting on my front porch. Then Civia arrived, and Jill, until we needed to move our little party to the backyard. My friends and family stayed for hours, distracted me, made me laugh.
Thank G-d for them.
Still, I wasn't able to eat. I suffered two more days, living on crackers and ginger ale, before I got to see an uncharacteristically miserable Dr. Fox. He had no answers to my questions of why, and he said I needed to start chemo immediately, the next morning. He put me on prednisone to make me eat, and my appetite returned immediately after losing 6 or 7 pounds in 6 days.
So here I am. I've now had two chemo treatments (3 weeks of chemo, 1 week off) and it seems to be working. My coloring is back to normal and I don't feel the tumors the way I could a week ago. I don't know what happens next, but I know I'm on this regimen indefinitely and that I'll do everything I can to extend and extend and extend my life. Like I said, I love it here, and I love you, and I'm grateful for your prayers. Please remember to keep my family in your hearts. An 8-year-old boy shouldn't be worrying about his mommy leaving. My teens need me as much as ever. My husband, too.
Well, this was the whole tale, and now you're caught up, and my state of mind is what it is. It's time for me to end this post and get out of the house.
I've been debating where to start my official story of this discovery. Some versions had me going back to January 1st, the opening battle of the war of 2011, when our beloved golden retriever Rudy suddenly died of cancer. Some had me accepting a wonderful long-term teaching assignment, thinking with a laugh that at least it wouldn't end with cancer, the way the last teaching assignment had.
The teaching assignment, then, which began unexpectedly on May 2. Oh, how wonderful to be back in first grade, but I didn't get the sort of start I needed to make things work optimally. I ended up with huge amounts of stress I probably mostly put upon myself. My back was coiled into layers of knots, my stomach started to hurt, my hair started to fall out. The stomach pain was strange, felt like bloating, like nothing I'd felt before. Amazing what stress could do. It's quite clear now that the stress precipitated the inevitable return and then served to hide the symptoms. I'd been to Dr. Fox in late March and was pronounced perfectly fine at that visit. G-d, what happened in less than three months.
On June 8 we celebrated Allison's confirmation from religious school, and then later we went to dinner to celebrate Jason's and Esther's birthdays. Jason had chosen to go to Chickie's and Pete's. I agreed for the sake of his birthday, but I do not enjoy seafood. My dinner was tasteless or worse, and I woke up in the middle of the night feeling horrible. Nothing alleviated the nausea, and I couldn't settle back to sleep. I had no appetite the next morning, and felt dizzy the whole day at work. Instead of my usual anal retentive preparation for the next day, I only stayed a half hour after the kids left, and fell asleep as soon as I arrived home. I awoke feeling no better. More tired, if possible, and I still couldn't eat. I missed the mandatory band parents' meeting, I couldn't get out of bed. And I felt extremely itchy, first in the middle, and then head to toe.
On June 10 I dragged myself off to school, figuring that somehow I'd summon the energy to walk all the way from my classroom to the main office. My energy had drained to the point that it was hard to talk and I was giving the kids worksheets to do (very unlike me, I like to be actively involved). I went home at lunchtime to nap. Allison woke me up with barely enough time to make it back to get my class. After school I hit the bed and did not emerge except to use the bathroom. Something was wrong with my urine. That's when I started to get concerned. I looked up my symptoms on the Internet, and discovered it could be hepatitis, gall stones, gallbladder ... or cancer. Ugh. I was too sick to worry too much about it. I went back to my curled up in a ball position, and missed the Larchmont Carnival. But! I did make it to see Super 8 that night with Jason. We'd been planning it for months and months, and we made it! I even stayed awake and enjoyed the movie.
June 11: Missed Jonah's baseball team's celebration of an excellent season. I laid in bed, trying to accept how I'd gone from Monday's avid cheerleader at the championship game to the unfed lump sweating in the sheets. I called the doctor, and was told that I needed to be seen and should consider a trip to the ER. Ken was more than ready, but not I. I had to get pictures of Jason leaving for his 8th grade dance. It was so important to me, I spent the entire day psyching myself for the 10-minute photo op. And I barely lasted 10 minutes. I swayed in the street, put on a great act for the other moms, and then couldn't handle it anymore. I would collapse. With an excuse of getting dinner ready, I rushed out of there.
That's when we went to the new Virtua hospital, where triage placed us behind every college aged moron with a cut foot. I saw the iCarly/Victorious special TWICE, and I wasn't even home with Jonah. I was starting to comprehend that I could have cancer, that I could die in the ER without being seen. Nobody noticed I was yellow until after the CT Scan ran hours later showed cancer chunks all over my liver. Then suddenly they couldn't understand how WE didn't see the jaundice.
The gastroenterologist who told me the news the next morning, after I'd been admitted to a beautiful room and become friendly with the nurse (who has an 8th grade son), was awkward and obviously unaccustomed to passing a death sentence to a youngish patient. He gawked and said the wrong things, then left. Then returned. Then left. Then returned. He did get me sedated quickly, though, because I was completely freaking out at the news, and by the sight of the nurse crying over my condition. My mom was with me, thank G-d, but I'd sent Ken home for a well-needed rest.
There was no reason for me to stay in the hospital. The IV sedation worked for a few hours, and I had a handful of scripts for nausea, itching, anxiety. I had to get to Dr. Fox. It wasn't like I would ever let Virtua treat me in 2 million years. So we went home, and found Barb and MJ waiting on my front porch. Then Civia arrived, and Jill, until we needed to move our little party to the backyard. My friends and family stayed for hours, distracted me, made me laugh.
Thank G-d for them.
Still, I wasn't able to eat. I suffered two more days, living on crackers and ginger ale, before I got to see an uncharacteristically miserable Dr. Fox. He had no answers to my questions of why, and he said I needed to start chemo immediately, the next morning. He put me on prednisone to make me eat, and my appetite returned immediately after losing 6 or 7 pounds in 6 days.
So here I am. I've now had two chemo treatments (3 weeks of chemo, 1 week off) and it seems to be working. My coloring is back to normal and I don't feel the tumors the way I could a week ago. I don't know what happens next, but I know I'm on this regimen indefinitely and that I'll do everything I can to extend and extend and extend my life. Like I said, I love it here, and I love you, and I'm grateful for your prayers. Please remember to keep my family in your hearts. An 8-year-old boy shouldn't be worrying about his mommy leaving. My teens need me as much as ever. My husband, too.
Well, this was the whole tale, and now you're caught up, and my state of mind is what it is. It's time for me to end this post and get out of the house.
Tuesday, June 21, 2011
Really. Don't read this.
It's horrible, it's ghastly, and I'm not writing it. I'm not me. I'm gone, and I don't know when or if I'll be returning. Cancer can take a life before it's over, and now I'm this ghost in the world, breathing down your necks, leading you to tears, dark places, the shadiest shadows of your souls.
You see me and you hug me and express whatever wishes or hopes you want, and I don't hear it. I see your eyes, the fear, the sadness. You don't want me to go, and if I were me, that alone would be enough to break my heart. I suppose it's for the best that I bear the brunt as a wisp of a human. I don't know how else to do this. I've never felt old, never once. Even with all I went through before, I never lost confidence in my body's ability to remain strong and hang tough. I'm so betrayed by myself.
I don't know how to look out at a world I've loved with my whole being. From the first daffodils of spring I breathe it all in: the first blades of green grass, the seeds that sprout into leaves on my trees, the stretching daylight hours. Most of all, I live for the emergence of the children on the street. The sounds of their playing into the later evening hours provides the soundtrack of freedom to me. What else is there to do when the homework is done and the kids' baseball championship games are in the record books? Head to Rita's for some water ice, swat the mosquitos, and gather the fireflies. It's so beautiful.
Four tissues already and I've been writing about 20 minutes. I dare not mention my own children. I can barely look at them. I'll save an entry for them.
I don't know how to look at time. Time, which I have recorded day by day, carefully, for more than 30 years of my life, in little datebooks. But I have not had nearly enough of it. I love it, I want to drink it up, remember it. I am the keeper of the memories. I tell everyone about every occasion. If you're reading this, I probably know your birthday.
This is it, in a nutshell. I don't want to go. And yet I am gone. I want to be me, but where am I? I am lost. Can you find me?
You see me and you hug me and express whatever wishes or hopes you want, and I don't hear it. I see your eyes, the fear, the sadness. You don't want me to go, and if I were me, that alone would be enough to break my heart. I suppose it's for the best that I bear the brunt as a wisp of a human. I don't know how else to do this. I've never felt old, never once. Even with all I went through before, I never lost confidence in my body's ability to remain strong and hang tough. I'm so betrayed by myself.
I don't know how to look out at a world I've loved with my whole being. From the first daffodils of spring I breathe it all in: the first blades of green grass, the seeds that sprout into leaves on my trees, the stretching daylight hours. Most of all, I live for the emergence of the children on the street. The sounds of their playing into the later evening hours provides the soundtrack of freedom to me. What else is there to do when the homework is done and the kids' baseball championship games are in the record books? Head to Rita's for some water ice, swat the mosquitos, and gather the fireflies. It's so beautiful.
Four tissues already and I've been writing about 20 minutes. I dare not mention my own children. I can barely look at them. I'll save an entry for them.
I don't know how to look at time. Time, which I have recorded day by day, carefully, for more than 30 years of my life, in little datebooks. But I have not had nearly enough of it. I love it, I want to drink it up, remember it. I am the keeper of the memories. I tell everyone about every occasion. If you're reading this, I probably know your birthday.
This is it, in a nutshell. I don't want to go. And yet I am gone. I want to be me, but where am I? I am lost. Can you find me?
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