Friday, September 28, 2007
random thoughts for friday
• This week has been a mixture of activity and exhaustion. I can summon up the energy to go to play group or Target, but then I come home and crash for hours. I guess that's part of the recovery process.
• We need a new coffee maker. Mom accidentally broke the glass carafe on our mid-1990s-model Krups 4-cup machine, and I stupidly threw out the whole machine, thinking it would be easier to find a new one than to buy a replacement carafe. They don't make as many 4-cup coffee makers anymore, though. I guess part of my thinking was that I inherited the Krups from my old boyfriend Billy, and I figured it was as good a time as any to get rid of old boyfriend stuff. (Never mind that we still sleep on the mattress he gave me.) So ... if anyone can recommend a well-designed 4-cup coffee maker that doesn't leak and uses cone filters instead of basket filters (though I guess that's not a big deal), let me know.
• My scar was looking a little green and leaky at one end yesterday, so we had to drive all the way to Maple Grove, where Dr. T. is on Thursdays, to have it checked out. Turns out it was minor, and he dabbed it up and patched it and sent us off. But the incision on the whole is still a little painful, which is normal. This thing is nearly 12 inches long and looks like an ugly, red slash across my abdomen, curving upward like a highway leading from LA to somewhere around Ohio. Every time I look in the mirror, I am surprised by it, and sometimes a little horrified. I hope it fades before too long.
• Daniel is so bonded with Steve right now. It's nice to see them so close, but I miss our old attachment. I feel like it's going to take some time to build it back up once I can lift him, and that's not for another three weeks. (I'm halfway through the six-week recovery!) Sometimes, with some coaxing, he will come up to me and give me a big hug, and that's so gratifying. At the same time, with my energy level the way it is now, I'm daunted by the prospect of taking care of him by myself again. It's going to be hard to transition back into that, especially since I'll be nearly 17 weeks pregnant by then. Oh well. I'll cross that bridge when I come to it.
• We're stuck on names for the baby. I think it will be easier this time around to pick a girl's name than a boy's name, which is the opposite of Daniel, whose name we chose right from the get-go. I walk around with one name in my head one day, another name another day, as if my subconscious is trying them on for size. Anyway, we have plenty of time, so I'm not too worried about it. It's still about six weeks or so until we have the big ultrasound and find out the baby's gender — and, of course, we don't really need to decide until the baby is born. But it's a little disconcerting not to have anything fixed.
• I've been thinking a lot about my friend Kerry, mother of a 3-year-old and a set of young triplets, who broke her foot this week. Ouch! I hope you are coping OK, Kerry.
• The weather here has been pretty much perfect lately. The leaves are changing color, and the air is cool but not unpleasantly so. I really should get outside more often (though this would call for me to actually get dressed!). Maybe this afternoon we will go for a walk or a long drive.
• We need a new coffee maker. Mom accidentally broke the glass carafe on our mid-1990s-model Krups 4-cup machine, and I stupidly threw out the whole machine, thinking it would be easier to find a new one than to buy a replacement carafe. They don't make as many 4-cup coffee makers anymore, though. I guess part of my thinking was that I inherited the Krups from my old boyfriend Billy, and I figured it was as good a time as any to get rid of old boyfriend stuff. (Never mind that we still sleep on the mattress he gave me.) So ... if anyone can recommend a well-designed 4-cup coffee maker that doesn't leak and uses cone filters instead of basket filters (though I guess that's not a big deal), let me know.
• My scar was looking a little green and leaky at one end yesterday, so we had to drive all the way to Maple Grove, where Dr. T. is on Thursdays, to have it checked out. Turns out it was minor, and he dabbed it up and patched it and sent us off. But the incision on the whole is still a little painful, which is normal. This thing is nearly 12 inches long and looks like an ugly, red slash across my abdomen, curving upward like a highway leading from LA to somewhere around Ohio. Every time I look in the mirror, I am surprised by it, and sometimes a little horrified. I hope it fades before too long.
• Daniel is so bonded with Steve right now. It's nice to see them so close, but I miss our old attachment. I feel like it's going to take some time to build it back up once I can lift him, and that's not for another three weeks. (I'm halfway through the six-week recovery!) Sometimes, with some coaxing, he will come up to me and give me a big hug, and that's so gratifying. At the same time, with my energy level the way it is now, I'm daunted by the prospect of taking care of him by myself again. It's going to be hard to transition back into that, especially since I'll be nearly 17 weeks pregnant by then. Oh well. I'll cross that bridge when I come to it.
• We're stuck on names for the baby. I think it will be easier this time around to pick a girl's name than a boy's name, which is the opposite of Daniel, whose name we chose right from the get-go. I walk around with one name in my head one day, another name another day, as if my subconscious is trying them on for size. Anyway, we have plenty of time, so I'm not too worried about it. It's still about six weeks or so until we have the big ultrasound and find out the baby's gender — and, of course, we don't really need to decide until the baby is born. But it's a little disconcerting not to have anything fixed.
• I've been thinking a lot about my friend Kerry, mother of a 3-year-old and a set of young triplets, who broke her foot this week. Ouch! I hope you are coping OK, Kerry.
• The weather here has been pretty much perfect lately. The leaves are changing color, and the air is cool but not unpleasantly so. I really should get outside more often (though this would call for me to actually get dressed!). Maybe this afternoon we will go for a walk or a long drive.
life without cable or tivo
As luck would have it, the only two TV shows Steve and I have any interest in watching these days had their season premieres at the same time last night: Grey's Anatomy (which Steve doesn't watch) and The Office (which we both watch). We worked out a plan: Steve watched and taped The Office in the living room, while I watched Grey's Anatomy in the bedroom. (We actually went to Radio Shack at 5 p.m. and bought an antenna for the bedroom TV. It didn't have one, since we'd previously used it just for watching movies.) Then we both watched (or rewatched) The Office after Daniel went to bed.
Frankly, Grey's Anatomy was disappointing. Some of the plot lines were OK, but I think it's turning into a later-season Ally McBeal or a second-season Desperate Housewives or a daytime soap opera — ridiculous and unbelievable. I mean, come on. Is Lexie Grey so self-absorbed and/or stupid that she would choose the melee of an emergency room arrival to reveal to Meredith that she is the sister she never knew existed? Wouldn't a reasonable person wait until a less frenentic moment for that? And Izzy just bugs me now, though I did like her at the end, when she chewed out her "dud" interns. And I just don't buy the love affair between Izzy and George. Meanwhile, I giggled most of the way through The Office. Or cringed. That show can be painful, too.
Frankly, Grey's Anatomy was disappointing. Some of the plot lines were OK, but I think it's turning into a later-season Ally McBeal or a second-season Desperate Housewives or a daytime soap opera — ridiculous and unbelievable. I mean, come on. Is Lexie Grey so self-absorbed and/or stupid that she would choose the melee of an emergency room arrival to reveal to Meredith that she is the sister she never knew existed? Wouldn't a reasonable person wait until a less frenentic moment for that? And Izzy just bugs me now, though I did like her at the end, when she chewed out her "dud" interns. And I just don't buy the love affair between Izzy and George. Meanwhile, I giggled most of the way through The Office. Or cringed. That show can be painful, too.
Monday, September 24, 2007
my sarcoma made it into harvard
"Wierd" is the word Dr. T. used to describe the sarcoma he removed from my abdomen. After being studied by several pathologists here, in fact, he has sent it off to Harvard's medical school for further study. Apparently, pathologists study such tumors and determine how malignant they are and, possibly, how they originated. My sort of sarcoma, for example, can originate from cells from any number of tissues: fat, ligaments, etc. From what they can tell, mine seems to have originated from multiple sources — they even found a bit of bone in it. Gross. Was it malignant? Yes, but at varying levels depending on where they tested it. Some parts of the sarcoma tested high-malignancy, and other parts tested relatively low. Anyway, they don't quite know what to make of it, which is why it has headed east. Perhaps someday my sarcoma will be featured in a medical journal!
All this has left me feeling a little wierd myself. If my sarcoma spontaneously erupted from more than one tissue, then I feel pretty vulnerable to a repeat attack. What in God's name caused this, anyway? All I hear is vague references to environmental factors, like chemical or radiation exposure, which to me could be anything: Leaky microwave? Mississippi crop-dusters? I have not done one iota of research into sarcomas so far, which is very unlike me. I'm usually really into "Internet research" on stuff like this. Of course, my efforts usually end up scaring the wits out of me, so maybe that's why I haven't touched this. I'm already scared enough with where my imagination leads me when I dwell on the cancer part of this journey: Will it come back? (There's a 50 to 60 percent chance that it won't.) How soon? (Probably in the next two years if it does.) Can they get it in time if it does? (As long as it doesn't spread.) Will I die of this? (That is a huge, huge unknown, and it hangs over my head every day now.)
I won't know anything certain for a while. I won't get another CT scan until after the baby is born (due date end of March). Then, it will be every four months, so hopefully if there's anything to catch, they'll catch it early. All I can do is try to live this life I have and focus on my healing and having this baby and try to enjoy the ride as best I can. I do feel much better than I did last week: I have much more energy, and I feel stronger. Yesterday, we walked all the way to the College of St. Catherine for Mass, and I did OK. That chapel is restfully beautiful, and Daniel got to play at the duck pond afterward. Plus, we ran into Steve's brother and his wife and their little girl, so we got to chat with them for a little while. By the time we started back home, I was pretty exhausted. The walk home was rough, but it was worth the effort.
All this has left me feeling a little wierd myself. If my sarcoma spontaneously erupted from more than one tissue, then I feel pretty vulnerable to a repeat attack. What in God's name caused this, anyway? All I hear is vague references to environmental factors, like chemical or radiation exposure, which to me could be anything: Leaky microwave? Mississippi crop-dusters? I have not done one iota of research into sarcomas so far, which is very unlike me. I'm usually really into "Internet research" on stuff like this. Of course, my efforts usually end up scaring the wits out of me, so maybe that's why I haven't touched this. I'm already scared enough with where my imagination leads me when I dwell on the cancer part of this journey: Will it come back? (There's a 50 to 60 percent chance that it won't.) How soon? (Probably in the next two years if it does.) Can they get it in time if it does? (As long as it doesn't spread.) Will I die of this? (That is a huge, huge unknown, and it hangs over my head every day now.)
I won't know anything certain for a while. I won't get another CT scan until after the baby is born (due date end of March). Then, it will be every four months, so hopefully if there's anything to catch, they'll catch it early. All I can do is try to live this life I have and focus on my healing and having this baby and try to enjoy the ride as best I can. I do feel much better than I did last week: I have much more energy, and I feel stronger. Yesterday, we walked all the way to the College of St. Catherine for Mass, and I did OK. That chapel is restfully beautiful, and Daniel got to play at the duck pond afterward. Plus, we ran into Steve's brother and his wife and their little girl, so we got to chat with them for a little while. By the time we started back home, I was pretty exhausted. The walk home was rough, but it was worth the effort.
more baby news
Last week's genetic screening came back with results that were better than I could have imagined. If you consider just my age, my risk of having a baby with Down syndrome is 1 in 52. Now, after the screen, my risk factor has dropped to 1 in 305. And so far, the baby looks normal in every way. So far, so good. I'm so relieved — and yet so perplexed by the mystery that is pregnancy. How some babies (like this one) survive such seemingly tough hurdles, and others (like that of a friend whom I learned about this morning) are destined to leave us far too soon.
Thursday, September 20, 2007
our (amazing) baby
Here she (or he) is ... the youngest member of our little family, at 12 weeks and a few days old. I am still amazed that this baby survived a six-hour surgery under general anesthesia, more than a week of narcotic painkillers and a CT scan, but as the genetic counselor said this morning, these little ones are more resilient than we imagine. Which seems ironic when you consider the high miscarriage rate in the first trimester and all the dire warnings against so much as drinking a glass of wine during pregnancy!
The baby seems to be doing just fine, and I think it's beautiful; it reminds me of Daniel's ultrasound picture at that age. It has all its arms and legs already — you can see one of its arms in front of its face and one of its legs kicking out — and it's growing at a rate that would suggest a due date of March 28, just a few days sooner than the charts predict based on the start of my last period. Not that that means a thing: Daniel was the same way, and remember how long he waited to come out? That's right ... 12 days. We don't have the results of the screening tests yet — the ones that will assess the risk of the baby having genetic abnormalities. We'll probably find out in a few days. I don't know that we'd do anything different if we got a high-risk result. I'm not interested in amniocentesis (which is an exact diagnostic test, unlike this). Obviously, we'll keep the baby no matter what. (Heck, she's come this far.) We'll probably just use the information to prepare for possibilities. But I just have a feeling that everything will be OK. (I also have a feeling she's a girl — I guess we'll know soon enough if my instincts are right.)
After a difficult and stressful beginning to the week, things are better now. Daniel finally started to warm up to my mom, so the three of us had a very nice Wednesday together. Mom flew back to Oregon this morning, and now it's just Steve and Daniel and me, trying to juggle time for Steve to log in at work and me to take lots of naps in between caring for Daniel.
Trying to eat well is another challenge, and I realized the other day that my morning sickness must have kicked back in. I can be so hungry that my innards ache, but put a plate of food in front of me, and my nausea wells up to the point where I can't eat more than a few bites. I'm always grateful when I can get a full meal into me because the food people have been bringing us is seriously delicious. In the past week and a half, our refrigerator has played host to chicken soup, vegetarian chili, shepherd's pie, spaghetti pie, lasagna, salads, pork chops with this fantastic pineapple-bread side dish, cheesy potatoes, cookies, banana bread, blueberry loaf and more. I don't know what we would do without the culinary kindness of our friends!
The baby seems to be doing just fine, and I think it's beautiful; it reminds me of Daniel's ultrasound picture at that age. It has all its arms and legs already — you can see one of its arms in front of its face and one of its legs kicking out — and it's growing at a rate that would suggest a due date of March 28, just a few days sooner than the charts predict based on the start of my last period. Not that that means a thing: Daniel was the same way, and remember how long he waited to come out? That's right ... 12 days. We don't have the results of the screening tests yet — the ones that will assess the risk of the baby having genetic abnormalities. We'll probably find out in a few days. I don't know that we'd do anything different if we got a high-risk result. I'm not interested in amniocentesis (which is an exact diagnostic test, unlike this). Obviously, we'll keep the baby no matter what. (Heck, she's come this far.) We'll probably just use the information to prepare for possibilities. But I just have a feeling that everything will be OK. (I also have a feeling she's a girl — I guess we'll know soon enough if my instincts are right.)
After a difficult and stressful beginning to the week, things are better now. Daniel finally started to warm up to my mom, so the three of us had a very nice Wednesday together. Mom flew back to Oregon this morning, and now it's just Steve and Daniel and me, trying to juggle time for Steve to log in at work and me to take lots of naps in between caring for Daniel.
Trying to eat well is another challenge, and I realized the other day that my morning sickness must have kicked back in. I can be so hungry that my innards ache, but put a plate of food in front of me, and my nausea wells up to the point where I can't eat more than a few bites. I'm always grateful when I can get a full meal into me because the food people have been bringing us is seriously delicious. In the past week and a half, our refrigerator has played host to chicken soup, vegetarian chili, shepherd's pie, spaghetti pie, lasagna, salads, pork chops with this fantastic pineapple-bread side dish, cheesy potatoes, cookies, banana bread, blueberry loaf and more. I don't know what we would do without the culinary kindness of our friends!
Tuesday, September 18, 2007
i'd like a big glass of whine
Dear Oprah,
Ugh, why did you go and publish that piece in this month's issue about how venting isn't really helpful and how courageous people (like Ghandi) learn to quit their bellyaching and channel it into positive change? Oprahhhhhhh. I just want to complain right now. I'm having a tough week. I am tired all the time. I don't hurt as much, but it still wipes me out to get through breakfast, much less the rest of the day. Mom is here, but Daniel doesn't like being around her if I'm not there — maybe he associates her with us leaving him. Sometimes he sobs if I just leave the room to go to the bathroom. So I feel like I'm doing more babysitting than I have the energy for, and it's exhausting for me, and it's frustrating for Mom, too. I'm glad Steve has a chance to go to work this week, but what on earth are we going to do when it's just him and me? I feel like I need as much care as a toddler sometimes. No one said this was going to be easy.
And then there's this control thing. Would you please publish an inspirational article about what to do when you're so out of control of your body, so physically helpless — no abdominal strength, no energy, no appetite despite eating for two, no lifting objects more than 10 pounds — that you are hypersensitive to things being out of control around you? Like a half-changed crib sheet. Or the George Foreman grill sitting out on the countertop instead of in its correct place on the shelf? Or the little cartons of yogurt that get lost in the refrigerator and trigger this giant panic reflex that the world is spiraling out of my control all around me? Oprah, how do I reign that in and refrain from taking it out on my saint of a husband and mother with an attitude of peevish snappishness? How, Oprah, how? I don't want to turn into one of those bitchy invalids who bark orders from their easy chairs all day.
Maybe, just this time, it's better to let it all out in one big vent. I'll think about all the ways I can channel my frustration into positive change during the long sleepness hours when I can't sleep at night. I'm sure that's what Ghandi did.
Love you, love the magazine,
Emilie
Ugh, why did you go and publish that piece in this month's issue about how venting isn't really helpful and how courageous people (like Ghandi) learn to quit their bellyaching and channel it into positive change? Oprahhhhhhh. I just want to complain right now. I'm having a tough week. I am tired all the time. I don't hurt as much, but it still wipes me out to get through breakfast, much less the rest of the day. Mom is here, but Daniel doesn't like being around her if I'm not there — maybe he associates her with us leaving him. Sometimes he sobs if I just leave the room to go to the bathroom. So I feel like I'm doing more babysitting than I have the energy for, and it's exhausting for me, and it's frustrating for Mom, too. I'm glad Steve has a chance to go to work this week, but what on earth are we going to do when it's just him and me? I feel like I need as much care as a toddler sometimes. No one said this was going to be easy.
And then there's this control thing. Would you please publish an inspirational article about what to do when you're so out of control of your body, so physically helpless — no abdominal strength, no energy, no appetite despite eating for two, no lifting objects more than 10 pounds — that you are hypersensitive to things being out of control around you? Like a half-changed crib sheet. Or the George Foreman grill sitting out on the countertop instead of in its correct place on the shelf? Or the little cartons of yogurt that get lost in the refrigerator and trigger this giant panic reflex that the world is spiraling out of my control all around me? Oprah, how do I reign that in and refrain from taking it out on my saint of a husband and mother with an attitude of peevish snappishness? How, Oprah, how? I don't want to turn into one of those bitchy invalids who bark orders from their easy chairs all day.
Maybe, just this time, it's better to let it all out in one big vent. I'll think about all the ways I can channel my frustration into positive change during the long sleepness hours when I can't sleep at night. I'm sure that's what Ghandi did.
Love you, love the magazine,
Emilie
the new mr. pitt
The venerable New York Times had the most hilarious typo on the front page of its Arts section this Sunday: In a bold teaser for the new Jesse James movie, toward the bottom of the page, it said: "Bratt Pitt." I couldn't believe my eyes! Did someone push it through as a joke, thinking it would get caught before it went to press? I even checked the article to make sure there isn't an actor by the name of Bratt Pitt, though I knew already that Brad Pitt is starring in this film. Are the Times' copy editors not as persnickety as everyone likes to think? Maybe it was a last-minute page proof that no one took time time to read thoroughly. I'd love to know.
And then part of me thought of my friend Elizabeth in Mississippi, who named her cat Brad Pitt. The stories she tells about him — like the one I won't tell in detail, involving one long strand of hair and kitty poop — make me think Bratt would be a good name for him.
And then part of me thought of my friend Elizabeth in Mississippi, who named her cat Brad Pitt. The stories she tells about him — like the one I won't tell in detail, involving one long strand of hair and kitty poop — make me think Bratt would be a good name for him.
Thursday, September 13, 2007
home again
Finally, I can post a proper post on this blog, and you all don't have to scroll down through dozens of comments. But I'm glad we had those, at least ... I can't believe there are 79 comments on it! You all have been so awesome with the support you've been giving my family and me.
I got home at about 4 p.m. yesterday. I was as surprised as anyone when the doctors making their rounds in the morning said they'd be giving me the discharge order that very day. Huh? Today? Am I really ready to go? I mean, I was no longer connected to tubes or wires of any kind, but still, I was tired most of the day, clumsy getting in and out of bed, still very aware of the aches and pains in my body. But it had been just about five days, like Dr. T. had predicted, and they seemed to think I'd manage fine at home — and I am, though I am still very groggy, clumsy and aware of the aches and pains.
Yesterday morning, I was sitting in the seventh-floor patient lounge I described earlier — the one with the beautiful view of the Mississippi River sparkling below, the St. Paul-Minneapolis bridges (I-94, Lake-Marshall Street and Ford Parkway) visible to the left, the downtown Minneapolis skyline to the right. I was just looking out the window when Dr. T. (my surgeon, the one who has the same birthday as me) came over and sat down next to me. He usually comes to see me in my room once a day. "You can run, but you can't hide," he joked, then told me that this spot, this view, was his favorite in the whole hospital. He seems like such a good, nice person, and I feel so grateful that we managed to get him as my surgeon. I know the first surgeon we met with two weeks ago pulled some strings to get us in with him. I will have to send them both thank-you notes when this is all over.
Anyway, when Dr. T. sat down next to me, I told him that I felt like it was going to be wierd to go home because up until now, I've been focusing so hard on just getting through this — the surgery, the immediate recovery. Once I'm home and getting back to normal (slowly — they say it'll take six weeks), I'll have more time to focus on the long term, to let the "cancer" word sink in, to contemplate the possibilities that this could come back, to wonder what the rest of my life will be like. Part of me feels so strongly that I don't want to let cancer define who I am as a person. That part of me wants to go out and get a sexy, crazy new haircut, or take up a new hobby with great passion, or to write a book, or something — I don't quite know yet — that will help remind me that my life and future are not just about cancer. A different part of me just wants to sink into a ball and succumb to a big bout of depression that I sense could be hovering somewhere on this recovery horizon.
Of course, right now (well, after I feel a little more well), I probably should spend the next few months focusing on this baby — The One Who Lived (lol!) — getting it ready to come into the world and hoping he or she hasn't undergone any significant damage in the past week. We'd already had an ultrasound set up for next week, the Nuchal Translucency Scan, which determines the risk for Down syndrome. Maybe we'll get an overall healthiness indicator then. I don't know if it's too soon.
Anyway, so I'm home. After a few tries with Steve's help, I've figured out how to get in and out of bed by myself, so that gives me some measure of freedom. Daniel hasn't seemed to have taken my absence hard at all — Steve is probably a better stay-at-home parent than I am! — but he also seems glad to have me home again. Before my surgery, Steve and I had spent a good amount of time worrying about our sleeping arrangments. Daniel still sleeps in our bed, and he is such a kicker that I was really worried we'd have to change his sleep habits, move him into his crib or onto a mattress on the floor or something. But last night, he slept between us as usual, and it seemed to work out fine. I stayed in the living room until Steve had gotten him into a sound sleep, which helped because lots of the kicking takes place when he is trying to get to sleep. Plus, I kept a body pillow between me and the center of the bed, so it added an extra level of protection for me. I don't know how Steve liked it — I think he felt it was a tight sqeeze and didn't get a very good night's sleep himself. All I know was that when I woke up at 3:15 to get a drink and take my Vicodin, the two of them were snuggled up next to each other and sleeping very soundly and happily, and I was so touched that I got up and took a picture.
I got home at about 4 p.m. yesterday. I was as surprised as anyone when the doctors making their rounds in the morning said they'd be giving me the discharge order that very day. Huh? Today? Am I really ready to go? I mean, I was no longer connected to tubes or wires of any kind, but still, I was tired most of the day, clumsy getting in and out of bed, still very aware of the aches and pains in my body. But it had been just about five days, like Dr. T. had predicted, and they seemed to think I'd manage fine at home — and I am, though I am still very groggy, clumsy and aware of the aches and pains.
Yesterday morning, I was sitting in the seventh-floor patient lounge I described earlier — the one with the beautiful view of the Mississippi River sparkling below, the St. Paul-Minneapolis bridges (I-94, Lake-Marshall Street and Ford Parkway) visible to the left, the downtown Minneapolis skyline to the right. I was just looking out the window when Dr. T. (my surgeon, the one who has the same birthday as me) came over and sat down next to me. He usually comes to see me in my room once a day. "You can run, but you can't hide," he joked, then told me that this spot, this view, was his favorite in the whole hospital. He seems like such a good, nice person, and I feel so grateful that we managed to get him as my surgeon. I know the first surgeon we met with two weeks ago pulled some strings to get us in with him. I will have to send them both thank-you notes when this is all over.
Anyway, when Dr. T. sat down next to me, I told him that I felt like it was going to be wierd to go home because up until now, I've been focusing so hard on just getting through this — the surgery, the immediate recovery. Once I'm home and getting back to normal (slowly — they say it'll take six weeks), I'll have more time to focus on the long term, to let the "cancer" word sink in, to contemplate the possibilities that this could come back, to wonder what the rest of my life will be like. Part of me feels so strongly that I don't want to let cancer define who I am as a person. That part of me wants to go out and get a sexy, crazy new haircut, or take up a new hobby with great passion, or to write a book, or something — I don't quite know yet — that will help remind me that my life and future are not just about cancer. A different part of me just wants to sink into a ball and succumb to a big bout of depression that I sense could be hovering somewhere on this recovery horizon.
Of course, right now (well, after I feel a little more well), I probably should spend the next few months focusing on this baby — The One Who Lived (lol!) — getting it ready to come into the world and hoping he or she hasn't undergone any significant damage in the past week. We'd already had an ultrasound set up for next week, the Nuchal Translucency Scan, which determines the risk for Down syndrome. Maybe we'll get an overall healthiness indicator then. I don't know if it's too soon.
Anyway, so I'm home. After a few tries with Steve's help, I've figured out how to get in and out of bed by myself, so that gives me some measure of freedom. Daniel hasn't seemed to have taken my absence hard at all — Steve is probably a better stay-at-home parent than I am! — but he also seems glad to have me home again. Before my surgery, Steve and I had spent a good amount of time worrying about our sleeping arrangments. Daniel still sleeps in our bed, and he is such a kicker that I was really worried we'd have to change his sleep habits, move him into his crib or onto a mattress on the floor or something. But last night, he slept between us as usual, and it seemed to work out fine. I stayed in the living room until Steve had gotten him into a sound sleep, which helped because lots of the kicking takes place when he is trying to get to sleep. Plus, I kept a body pillow between me and the center of the bed, so it added an extra level of protection for me. I don't know how Steve liked it — I think he felt it was a tight sqeeze and didn't get a very good night's sleep himself. All I know was that when I woke up at 3:15 to get a drink and take my Vicodin, the two of them were snuggled up next to each other and sleeping very soundly and happily, and I was so touched that I got up and took a picture.
Thursday, September 6, 2007
updates :: leave them (and read them) here
OK, here's my plan. Steve may update this blog after my surgery, but I can't be sure of that, as I haven't shown him how to do it yet. So what I am going to do is ask that anyone who hears from us — by phone, by e-mail, from hospital visits, etc. — please post your own update in the Comments section of this post. Hopefully, we'll collect enough comments from you to give a general picture of how I'm doing. (Kind of like our own little wikipedia!)
[If you've never visited the comments, just look down at the darker-green bar below the end of this post, at the right, where it shows how many comments there are, just above Labels. Click on that comment link, and you'll end up at a new page where you can read other people's comments.]
Hopefully that will suffice until Steve or I get a chance to update this blog. Thanks again for all your prayers and good wishes — I've been feeling enveloped in love all week.
* * *
Edited to add the updates I posted in the comments section
Woo-hoo ... this hospital has a computer in the floor lounge! (Unfortunately, it just blocked me from posting a new post on my blog. I'll see if I can post it here.) It feels so great to connect to the real world ... and to see all your wonderful good wishes. Thanks a lot, everyone!
So here's what's up. Some random thoughts, as it were ...
Today I was up walking for the first time, and they took my catheter out and started allowing me to eat liquids, which means my meals consist of a flavor of broth, a flavor of Jello, hot tea, and a flavor of juice. It's nice to be able to eat again. IV fluids just don't do the trick ...
Yesterday, they moved me from ICU, where I spent two nights, to a general floor. I am in a room with a roommate, who is, thankfully, very nice and doesn't bug me when I want to be alone. We've chatted a bit and found out some things we have in common, including that we used the same fertility clinic (11 years apart) when we were trying to conceive our firstborns. (She and her husband have just the one daughter.)
Getting out of bed is getting easier, but there's still a lot of pain. It's a lot like getting used to moving again after a c-section, but so, so much more intense and longer to heal. My scar is over a foot long (at least it seems that way from the few glimpses I've allowed myself to take), and it extends from my mid-left side over to the right edge of my right side. It is healing really well, though. I get a lot of approving comments on it from the nurses.
I am on my fourth IV, and they draw blood at least twice a day, so my arms are all bruised up. I have a lot of vein issues, let's just say, so this is a source of some discomfort. A volunteer came around today giving hand massages, and that was nice. We watched Oprah together. (Season opener; David Letterman and Lisa Marie Presley were on.)
The surgery itself: I guess it lasted nearly seven hours, and it was very complicated. The tumor had formed many, many tiny little blood vessels, which it was using to attach itself to my vena cava, my aorta, even part of my spine, to leach blood -- basically, it was feeding off me, which is the grossest, most monstrous thing I can imagine. That's why I lost so much blood during the surgery and later had to have a blood transfusion. Dr. T. says he got it all out, and one of the other doctors told me it was one of the toughest surgeries he had done. I just hope and pray that it IS all out and that it doesn't come back. Or that if it does, I don't have to undergo this big of a surgery because the recovery has been really, really tough so far, if I'm honest. Today has been a turning point, as now I feel a lot more mobile.
The low point was yesterday morning. I was in so much pain and felt so isolated and alone. I was still in ICU, and no one was giving me a good answer about when I was going to get moved to a regular unit. (Daniel isn't allowed to visit in ICU, you see). First they were telling me Saturday night. Then, Sunday morning, they were saying later in the day. Then, later Sunday, a new nurse started her shift, and when I asked her when she thought I might be moving, she said very matter-of-factly, no compassion in her voice, "Honey, it's doubtful you'll be going today. They're really busy up there." So I got all ticked off (and started crying) and told her I felt like people were giving me a runaround, and she had the charge nurse check on things, and I was upstairs by 3 p.m. And Steve and Daniel have been to visit together yesterday and today, and it does me so good to see them! Daniel is taking everything so well. He seems to be in a good mood at home, and he's happy to see me here, not scared or wierded out. Just a lot of little smiles. Aaahhh...
It feels like there's going to be a lot of recovery ahead of me -- it still hurts to roll over, walk, or get out of bed, but at least I can do it with less help now. Next hurdle: emptying the bowels. Considering how much it hurts to laugh, cough or otherwise tighten up any of my abdominal muscles (which were all cut during the surgery), I hope they don't force the laxatives or suppositories on me too soon. :)
Oh, it feels so good to be able to sit here at this computer and look out the river at the sun going down over the Mississippi River, the outline of the Minneapolis skyline glowing at sunset. Things are looking up!
* * *
ME AGAIN! It's Tuesday, and it feels as if a world of changes has happened since last night when I last wrote:
I am completely unattached to my IV! I took a shower today! I am walking and getting out of bed completely on my own! I am eating solid foods!
Regina and Cathy, your balloon and package of magazines arrived this morning. I look forward to reading some real trash ;-) (though I've just begun Jonathan Strange, and it's good, too -- thanks, Regina).
Terry, a weekend meal is always welcome. Liz, thanks for your visit yesterday. All of you who have sent cards, gift certificates, meals, etc., we appreciate them very much. (Steve did tell me we have a bunch of cookies in the house!) Anyone who wants to visit is most welcome -- just give a call first to make sure I'll be decent. I'll probably be going home in a couple of days.
[If you've never visited the comments, just look down at the darker-green bar below the end of this post, at the right, where it shows how many comments there are, just above Labels. Click on that comment link, and you'll end up at a new page where you can read other people's comments.]
Hopefully that will suffice until Steve or I get a chance to update this blog. Thanks again for all your prayers and good wishes — I've been feeling enveloped in love all week.
Edited to add the updates I posted in the comments section
Woo-hoo ... this hospital has a computer in the floor lounge! (Unfortunately, it just blocked me from posting a new post on my blog. I'll see if I can post it here.) It feels so great to connect to the real world ... and to see all your wonderful good wishes. Thanks a lot, everyone!
So here's what's up. Some random thoughts, as it were ...
Today I was up walking for the first time, and they took my catheter out and started allowing me to eat liquids, which means my meals consist of a flavor of broth, a flavor of Jello, hot tea, and a flavor of juice. It's nice to be able to eat again. IV fluids just don't do the trick ...
Yesterday, they moved me from ICU, where I spent two nights, to a general floor. I am in a room with a roommate, who is, thankfully, very nice and doesn't bug me when I want to be alone. We've chatted a bit and found out some things we have in common, including that we used the same fertility clinic (11 years apart) when we were trying to conceive our firstborns. (She and her husband have just the one daughter.)
Getting out of bed is getting easier, but there's still a lot of pain. It's a lot like getting used to moving again after a c-section, but so, so much more intense and longer to heal. My scar is over a foot long (at least it seems that way from the few glimpses I've allowed myself to take), and it extends from my mid-left side over to the right edge of my right side. It is healing really well, though. I get a lot of approving comments on it from the nurses.
I am on my fourth IV, and they draw blood at least twice a day, so my arms are all bruised up. I have a lot of vein issues, let's just say, so this is a source of some discomfort. A volunteer came around today giving hand massages, and that was nice. We watched Oprah together. (Season opener; David Letterman and Lisa Marie Presley were on.)
The surgery itself: I guess it lasted nearly seven hours, and it was very complicated. The tumor had formed many, many tiny little blood vessels, which it was using to attach itself to my vena cava, my aorta, even part of my spine, to leach blood -- basically, it was feeding off me, which is the grossest, most monstrous thing I can imagine. That's why I lost so much blood during the surgery and later had to have a blood transfusion. Dr. T. says he got it all out, and one of the other doctors told me it was one of the toughest surgeries he had done. I just hope and pray that it IS all out and that it doesn't come back. Or that if it does, I don't have to undergo this big of a surgery because the recovery has been really, really tough so far, if I'm honest. Today has been a turning point, as now I feel a lot more mobile.
The low point was yesterday morning. I was in so much pain and felt so isolated and alone. I was still in ICU, and no one was giving me a good answer about when I was going to get moved to a regular unit. (Daniel isn't allowed to visit in ICU, you see). First they were telling me Saturday night. Then, Sunday morning, they were saying later in the day. Then, later Sunday, a new nurse started her shift, and when I asked her when she thought I might be moving, she said very matter-of-factly, no compassion in her voice, "Honey, it's doubtful you'll be going today. They're really busy up there." So I got all ticked off (and started crying) and told her I felt like people were giving me a runaround, and she had the charge nurse check on things, and I was upstairs by 3 p.m. And Steve and Daniel have been to visit together yesterday and today, and it does me so good to see them! Daniel is taking everything so well. He seems to be in a good mood at home, and he's happy to see me here, not scared or wierded out. Just a lot of little smiles. Aaahhh...
It feels like there's going to be a lot of recovery ahead of me -- it still hurts to roll over, walk, or get out of bed, but at least I can do it with less help now. Next hurdle: emptying the bowels. Considering how much it hurts to laugh, cough or otherwise tighten up any of my abdominal muscles (which were all cut during the surgery), I hope they don't force the laxatives or suppositories on me too soon. :)
Oh, it feels so good to be able to sit here at this computer and look out the river at the sun going down over the Mississippi River, the outline of the Minneapolis skyline glowing at sunset. Things are looking up!
ME AGAIN! It's Tuesday, and it feels as if a world of changes has happened since last night when I last wrote:
I am completely unattached to my IV! I took a shower today! I am walking and getting out of bed completely on my own! I am eating solid foods!
Regina and Cathy, your balloon and package of magazines arrived this morning. I look forward to reading some real trash ;-) (though I've just begun Jonathan Strange, and it's good, too -- thanks, Regina).
Terry, a weekend meal is always welcome. Liz, thanks for your visit yesterday. All of you who have sent cards, gift certificates, meals, etc., we appreciate them very much. (Steve did tell me we have a bunch of cookies in the house!) Anyone who wants to visit is most welcome -- just give a call first to make sure I'll be decent. I'll probably be going home in a couple of days.
nerves
Mine are strangely calm right now, though I've been antsy all day and busy all week. Play group, shopping errands, the Picasso exhibit (worth seeing!), finishing up two freelance articles — done, done, done, done. Now it's Thursday night, and I've washed my hair and shaved my legs (you never know ...) and packed my bathrobe and new slippers (a gift!); and Daniel has finally gone to sleep, so I'm trying to wrap up loose ends, like printing out a schedule of Daniel's day for the babysitters, typing up instructions for Steve on how to update my blog, and checking all my e-mail. (I can't possibly answer it all, just as I can't return all the phone calls I've been getting in the past couple of days. That's just the way it is, and I trust people understand.) It kind of feels like how I feel just before I go on a long trip — so much to do to set the house in order and make sure everything is taken care of. Not until I give Daniel one last squeeze — I'm going to miss holding him so much — and leave for the hospital with Steve can I focus on myself and what's about to happen.
I think I'm going to pull through fine. The short-term recovery is going to be rough, an adjustment for everyone, and the long-term prognosis for the cancer's return is going to be always hanging over my head, but for the in-between, I'm going to be OK. I'm worried about the baby, though — both babies, actually. I'm dreading waking up tomorrow evening and hearing someone say, "I'm very sorry, but we lost the baby." That would add a layer of numb heartbreak that I can't bear to face, though I feel like I've been trying to accept it all week, just in case. And then there's my living, breathing baby — not really a baby anymore, more a toddler, since he's walking practically nonstop now. He's too young to understand why his mommy isn't home, why when she does get home she won't pick him up, why any of this is happening. I just hope he is a resilient little guy, and I know he will be in good hands with Steve. He's been really bonding with his dad lately. They dance together to Daniel's favorite music. It's so cute to see: Steve picks him up and foxtrots or two-steps or just spins him around the floor, depending on what the music calls for. Daniel's smile is so big. He loves his daddy.
And I love him, too. I have to say that Steve has been this amazing rock in the past week and a half. I've been holding it together pretty OK, too, but I keep thinking if the roles were reversed — if something had happened to Steve — I think I might be a wreck. I don't know how I got so lucky to have a husband like this, seriously.
I think I'm going to pull through fine. The short-term recovery is going to be rough, an adjustment for everyone, and the long-term prognosis for the cancer's return is going to be always hanging over my head, but for the in-between, I'm going to be OK. I'm worried about the baby, though — both babies, actually. I'm dreading waking up tomorrow evening and hearing someone say, "I'm very sorry, but we lost the baby." That would add a layer of numb heartbreak that I can't bear to face, though I feel like I've been trying to accept it all week, just in case. And then there's my living, breathing baby — not really a baby anymore, more a toddler, since he's walking practically nonstop now. He's too young to understand why his mommy isn't home, why when she does get home she won't pick him up, why any of this is happening. I just hope he is a resilient little guy, and I know he will be in good hands with Steve. He's been really bonding with his dad lately. They dance together to Daniel's favorite music. It's so cute to see: Steve picks him up and foxtrots or two-steps or just spins him around the floor, depending on what the music calls for. Daniel's smile is so big. He loves his daddy.
And I love him, too. I have to say that Steve has been this amazing rock in the past week and a half. I've been holding it together pretty OK, too, but I keep thinking if the roles were reversed — if something had happened to Steve — I think I might be a wreck. I don't know how I got so lucky to have a husband like this, seriously.
Monday, September 3, 2007
10 weeks
I'm one-quarter of the way through my pregnancy, and damn it, I want to celebrate that. I have no idea whether this baby will be alive one week from now, but right now, she's alive and moving around. (OK, maybe it's a he. I just have this feeling.) I've got a little bump — earlier than with Daniel, but I hear you start to show earlier with the second baby because the uterus has muscle memory or something. Anyway, I look pregnant. I feel pregnant, though sometimes these days I can't tell whether my nausea is from nervousness or morning sickness. I can't appreciate the twingy, bloaty feeling of my belly growing because I am scared it will bump into the tumor. I just want to get this surgery over with and get this awful, awful cancer out of me.I keep thinking this baby may have saved my life. It was right after I found out I was pregnant that I noticed the hardness on the right side of my abdomen. I was lying down on the bed, just feeling around my belly with that certain sense of wonder and curiosity that pregnant women get, when I felt it. Left side, soft tissue. Right side, hardness. I wondered if that was normal, like maybe we have an extra organ over there, like the liver, that makes our right sides firmer than the left. I checked Steve, but he felt the same on both sides. Still, I didn't think about it much for two weeks until I had my routine pregnancy checkup. I mentioned it to the midwife, and she suggested I get it checked out. She thought it might have been something with my liver. But when I went to the doctor, he didn't think it my liver. He wanted me to get an ultrasound, so I did, a week ago, and that's how the ball got rolling.
So if I hadn't been pregnant, would I have been so interested in feeling my midsection? If I hadn't had an OB appointment, would I have gone to a doctor this soon to get it checked out? Most likely not, which means I wouldn't have known anything was wrong until I started feeling pain, and by then it could have been much worse, maybe too late. So thank you, baby. I hope you live to see a long life here, but if you don't, I will be grateful to you for the rest of mine.
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