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.
Wednesday, June 29, 2011
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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