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.
Thursday, August 18, 2011
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?
Subscribe to:
Posts (Atom)
