Took Thursday off work. Had a nice day with GH, running errands, eating lunch out, just being together, crying and laughing. It's just absurd to talk about where you want to be buried and have it be a legitimate conversation, you know?
Friday my brother- and sister-in-law arrived for the weekend. The timing was fortuitous because I was slated to work at the yard sale for my local moms of twins club. Sure, I could have gotten out of it, but I was actually really looking forward to it. It all worked out because GH basically spent all day Friday in bed. He was just exhausted and could not get up. His mind felt hazy and his body followed suit. It was scary, especially since his oncologist said that if his liver continues to fail, the main symptoms will be sleepiness, nausea, and difficulty eating, all of which he has had in spades over the past few days. He might also have pain, but so far that's not a real issue.
Today I worked at the twin sale again, leaving GH and his siblings in charge of the kids. Thank goodness the sibs were here as GH was often out of commission, although he was better today than yesterday.
I feel so sad and so angry. It's terrifying that suddenly GH's physical condition is palpably worse. I don't want to spend our time together talking about managing his family, making plans for us to get a roster of friends signed up to help us in the evenings, and taking care of chores.
I'm planning to be at work next week, but to start laying the groundwork for a leave.
Honestly, I feel like I'm an actor in someone else's life. This can't really be my life, can it?
Oddly, one of my coping mechanisms since Wednesday's appointment has been retail therapy. I abhor shopping, yet suddenly I want to spend, spend, spend. I have directed my urge to spend towards the twins. I got them sun hats at Target on Thursday, then went a little crazy at the twin sale. I found some really cute clothes for cheap, and a bunch of fun toys: a bead maze, a shape sorter, a Little Tykes ride-on/push car, a Little Tykes pizza oven, a Melissa and Doug tool box, a Fisher-Price popcorn popper push toy, and a few puzzles. The kids are thrilled. They are loving the Little Tykes car, although it's a tad big for them. I can't wait for warmer weather to put them in their new summer clothes.
My sister- and brother-in-law had to help me put the twins to bed tonight; GH wasn't up to it. My sibs-in-law were great, but the kids know the difference. Riley was so upset that I had not been the one to change him into his pjs that he sobbed for almost 10 minutes when I put him in bed. I finally had to go in and rock him for a few minutes, sing him a song, and try again. He went right down then. Poor little man. Maddie coped better, but shed a lot of tears on the changing table when GH was not there to get her ready. Sigh.
Our consult with Mr. Big Important Doctor is Wednesday, although Mr. BID is on vacation, so we're seeing one of his colleagues. I'm trying to keep the faith, but I have to tell you that I'm losing ground daily. GH's condition has so clearly declined sharply in the past few days.
I'm not ready. I'll never be ready. I don't want to share GH with anyone right now. I want him all to myself for as long as I can have him. Oh, there are so many things that I want, so many things.
31 March 2007
28 March 2007
You Know It's a Bad Appointment with the Oncologist When . . .
1. She uses the word hospice.
2. She suggests that now is the time for me to look into taking an extended leave from work.
3. She says, "I'm so sorry" more times than I could count on one hand.
4. By the end, she's crying too.
(We are going to be consulting with a GI cancer specialist at a different hospital as well as looking into clinical trials. Also, if none of those options bear fruit, GH's oncologist is willing to give him a chemo drug he's been on before that has low liver toxicity. But the bottom line is that we need to be prepared for the worst. GH's oncologist has already consulted with many, many other docs and the chemo she's suggesting was helpful, but GH went off of it because it was no longer working. We'll keep trying and keep hoping, but it was a tough, tough day.)
2. She suggests that now is the time for me to look into taking an extended leave from work.
3. She says, "I'm so sorry" more times than I could count on one hand.
4. By the end, she's crying too.
(We are going to be consulting with a GI cancer specialist at a different hospital as well as looking into clinical trials. Also, if none of those options bear fruit, GH's oncologist is willing to give him a chemo drug he's been on before that has low liver toxicity. But the bottom line is that we need to be prepared for the worst. GH's oncologist has already consulted with many, many other docs and the chemo she's suggesting was helpful, but GH went off of it because it was no longer working. We'll keep trying and keep hoping, but it was a tough, tough day.)
Crabby
Meeting with GH's oncologist today. Feeling apprehensive and, due to stress, crabby. GH's doc said last Friday that if she came up with a way to place an external drain or found another solution that she'd call us before today's appointment. We have received no call. This does not bode well.
Trying to remain positive. Having only intermittent success.
Trying to remain positive. Having only intermittent success.
27 March 2007
Loss for Words
I was just getting myself a coffee in the kitchen at work. One of my coworkers asked me how GH was doing. I said that he'd been better, that he was having a lot of trouble with his liver right now. She shook her head, said she was sorry to hear that, and then said something that people say to me relatively often: "I don't know how you do it."
I never quite know what to say in response to that. What I said today was, "Frankly, I don't know how we do it, either." Sometimes I say that we do it because we don't have a choice. Sometimes I just say, "It's tough." Sometimes I say, "You could do it too, if you had to, and I hope you never do."
I think people mean it as a compliment, but I admit that I find it a strange thing to say. I'm not entirely clear on what "it" is, for starters. What I always assume people mean is that they don't know how we keep on fighting, keep on coming to work, keep on living our life as normally as possible, in the face of some awful circumstances. If that is indeed what people mean, then my honest answer to their question is that for me, there's no other way to do it.
To give that answer would entail a discussion I'm not usually in the mood to have, though, so I try to keep it simple, but honest. "It's not easy" pretty much covers those bases.
I never quite know what to say in response to that. What I said today was, "Frankly, I don't know how we do it, either." Sometimes I say that we do it because we don't have a choice. Sometimes I just say, "It's tough." Sometimes I say, "You could do it too, if you had to, and I hope you never do."
I think people mean it as a compliment, but I admit that I find it a strange thing to say. I'm not entirely clear on what "it" is, for starters. What I always assume people mean is that they don't know how we keep on fighting, keep on coming to work, keep on living our life as normally as possible, in the face of some awful circumstances. If that is indeed what people mean, then my honest answer to their question is that for me, there's no other way to do it.
To give that answer would entail a discussion I'm not usually in the mood to have, though, so I try to keep it simple, but honest. "It's not easy" pretty much covers those bases.
Nine Months
A few days late, the twins had their nine-month checkup with the pediatrician today. The numbers:
Riley is 19lbs, 5oz and 27.5 inches long. He was, however, screaming at the top of his lungs while getting measured*, and the good doctor thinks that his height measurement was a little off. He's probably a bit longer.
Maddie is 18lbs, 15oz and 27.75 inches long.
Both babies are around the 50 percentile mark for weight. Maddie is 75th percentile for height, while Riley is somewhere between 25th and 50th, but that is probably off. Both of them are 90th percentile for head size. They take after their dad.
Everything looked great. Riley has a bit of eczema. Maddie has a fungal infection on her girl parts. Both kids are "blessed" with sensitive skin from Mom and Dad. We got the green light to introduce dairy and eggs and let them play with finger food. Let the games begin!
The pediatrician, who I love, ended the appointment by saying, "They are perfect." I already knew that, but it was nice to hear it from a professional.
*GH and I dropped the kids off at daycare at 8:30, went out for breakfast, then picked them back up at 9:45 for a 10:00 appointment. Normally they get bottles at 10:00; I had asked the women at daycare to not feed them before we picked them up so that I could just breastfeed them at the doctor's office. Well, Riley saw one of the other kids getting a bottle--an Avent, just like he takes--at 9:30 and he freaked out because he wanted a bottle, too. Poor little man! He had to wait until we got to the doc's and he got all weighed and measured. Sometimes it's hard to be a baby.
Riley is 19lbs, 5oz and 27.5 inches long. He was, however, screaming at the top of his lungs while getting measured*, and the good doctor thinks that his height measurement was a little off. He's probably a bit longer.
Maddie is 18lbs, 15oz and 27.75 inches long.
Both babies are around the 50 percentile mark for weight. Maddie is 75th percentile for height, while Riley is somewhere between 25th and 50th, but that is probably off. Both of them are 90th percentile for head size. They take after their dad.
Everything looked great. Riley has a bit of eczema. Maddie has a fungal infection on her girl parts. Both kids are "blessed" with sensitive skin from Mom and Dad. We got the green light to introduce dairy and eggs and let them play with finger food. Let the games begin!
The pediatrician, who I love, ended the appointment by saying, "They are perfect." I already knew that, but it was nice to hear it from a professional.
*GH and I dropped the kids off at daycare at 8:30, went out for breakfast, then picked them back up at 9:45 for a 10:00 appointment. Normally they get bottles at 10:00; I had asked the women at daycare to not feed them before we picked them up so that I could just breastfeed them at the doctor's office. Well, Riley saw one of the other kids getting a bottle--an Avent, just like he takes--at 9:30 and he freaked out because he wanted a bottle, too. Poor little man! He had to wait until we got to the doc's and he got all weighed and measured. Sometimes it's hard to be a baby.
26 March 2007
Operation Cheerios
Our normal morning routine involves the twins playing with toys in their clip-on high chairs while GH and I eat some oatmeal before getting on with the day. I love family breakfast time. The twins are usually happy to just hang out and it's a nice time for us all to be together.
This morning, Madeleine was cranky for no reason that I could discern, and Riley was seriously indignant that GH would not share his oatmeal. Riley! You just breastfed for twenty minutes! I thought to myself. But hey, a boy can still be hungry, right? So I decided that it was time for Operation: Cheerios.
We'd put off giving the twins Cheerios (in our case, Trader Joe's Os) because our pediatrician had said no wheat until nine months. Also, Riley has a tendency to gag on food that is not pureed. Well, nine months came and went last week and I didn't have any pureed food thawed (plus I wanted to eat my own breakfast, not feed the babies!), so I threw some Os in front of the twins and let them go wild.
GH and I tried to show them how to eat the cereal, but they didn't really get it. It did keep them occupied, though, as they tried to pick the rounds up. I popped a couple of pieces (one at at time, natch) into Ri-Man's mouth, and he looked confused but did gum them and swallow them without incident. Maddie was like Fort Knox when I tried to put any in her mouth, but she did like throwing them on the floor.
And just like that, another new era in their lives has begun.
This morning, Madeleine was cranky for no reason that I could discern, and Riley was seriously indignant that GH would not share his oatmeal. Riley! You just breastfed for twenty minutes! I thought to myself. But hey, a boy can still be hungry, right? So I decided that it was time for Operation: Cheerios.
We'd put off giving the twins Cheerios (in our case, Trader Joe's Os) because our pediatrician had said no wheat until nine months. Also, Riley has a tendency to gag on food that is not pureed. Well, nine months came and went last week and I didn't have any pureed food thawed (plus I wanted to eat my own breakfast, not feed the babies!), so I threw some Os in front of the twins and let them go wild.
GH and I tried to show them how to eat the cereal, but they didn't really get it. It did keep them occupied, though, as they tried to pick the rounds up. I popped a couple of pieces (one at at time, natch) into Ri-Man's mouth, and he looked confused but did gum them and swallow them without incident. Maddie was like Fort Knox when I tried to put any in her mouth, but she did like throwing them on the floor.
And just like that, another new era in their lives has begun.
23 March 2007
The Verdict
There is a blockage. However, it is very deep inside the liver and, according to GH's oncologist, it cannot be reached surgically to be corrected.
So we're in a holding pattern.
GH's oncologist is looking into options for us. We will meet with her next Wednesday to see what she proposes. She mentioned something about an exterior drain (?), but we're not really sure what the deal is. We were both in a bit of shock when we heard the news, so didn't think to ask coherent questions. We do have her cell phone number and may well be using it this weekend once we pull together a list of questions.
Guess you'll have to keep those fingers, etc. crossed, if you don't mind. As GH said, "This can't be the end of our story. It just can't."
So we're in a holding pattern.
GH's oncologist is looking into options for us. We will meet with her next Wednesday to see what she proposes. She mentioned something about an exterior drain (?), but we're not really sure what the deal is. We were both in a bit of shock when we heard the news, so didn't think to ask coherent questions. We do have her cell phone number and may well be using it this weekend once we pull together a list of questions.
Guess you'll have to keep those fingers, etc. crossed, if you don't mind. As GH said, "This can't be the end of our story. It just can't."
22 March 2007
Where Things Stand
We had a surprisingly calm, normal evening last night. I think I'll be OK until Friday, when I go to the hospital with GH for the test. There's nothing I hate more than waiting for test results, so Friday will be a stressful day.
A bit more info about the situation. A stat read was done on GH's CT scan yesterday, and that did not reveal any obvious blockages in the main bile ducts. This does not mean that there is no blockage, but it is troublesome. The imaging that will be done on Friday will give us a much better picture of things.
As I mentioned, if there is a blockage, GH will have surgery same-day to place a shunt as a work-around. He will probably have to stay overnight at the hospital for this. As it would happen, my father-in-law arrives for the weekend tomorrow afternoon, so I will have another set of hands on deck to help me with the babies. He's way more calm and rational than my mother-in-law, which is good. He's also less comfortable with baby care, but I know he'll do what he can.
The twins are usually home with me on Fridays, but I've made arrangements for them to be at daycare so that I can go to the hospital with GH. Add to the list of reasons I [heart] my daycare: they are keeping the twins tomorrow gratis as a gift to me and GH. The told me not to worry about the time as far as when I could pick them up in the afternoon, and they offered to help out anytime over the weekend if we need anything. They are awesome.
Emotionally, I'm still taking things in. As I said, I think Friday will be my day to get hit with the reality of it all.
Keep the fingers crossed and the thoughts and prayers coming. It all helps, and it's all appreciated.
A bit more info about the situation. A stat read was done on GH's CT scan yesterday, and that did not reveal any obvious blockages in the main bile ducts. This does not mean that there is no blockage, but it is troublesome. The imaging that will be done on Friday will give us a much better picture of things.
As I mentioned, if there is a blockage, GH will have surgery same-day to place a shunt as a work-around. He will probably have to stay overnight at the hospital for this. As it would happen, my father-in-law arrives for the weekend tomorrow afternoon, so I will have another set of hands on deck to help me with the babies. He's way more calm and rational than my mother-in-law, which is good. He's also less comfortable with baby care, but I know he'll do what he can.
The twins are usually home with me on Fridays, but I've made arrangements for them to be at daycare so that I can go to the hospital with GH. Add to the list of reasons I [heart] my daycare: they are keeping the twins tomorrow gratis as a gift to me and GH. The told me not to worry about the time as far as when I could pick them up in the afternoon, and they offered to help out anytime over the weekend if we need anything. They are awesome.
Emotionally, I'm still taking things in. As I said, I think Friday will be my day to get hit with the reality of it all.
Keep the fingers crossed and the thoughts and prayers coming. It all helps, and it's all appreciated.
21 March 2007
Screw You, Cancer
I'm afraid, my friends, that despite all the thoughts, prayers, and crossed everythings, the news is not good.
GH's bilirubin levels were extremely elevated this week, as in shockingly, astoundingly elevated. When his bloodwork came in, the whole oncology team basically came running.
What this means for us is that on Friday, GH will be going to the hospital where a detailed image of his liver will be taken. With any luck, a blockage will be found that is causing bile to back up into his liver and elevate his bilirubin. If this is the case, a simple, endoscopic surgery will be performed to insert a stent that will reroute the bile and fix the problem. A blockage seems likely since the bilirubin level shot up so quickly and otherwise GH feels relatively OK.
There's another possibility, though. It could be that the disease has progressed so much that the liver is just giving up, that it just can't do the work it's being asked to do. If this is the case, there is no fix. There's just getting ready for the end.
I'll keep you posed.
GH's bilirubin levels were extremely elevated this week, as in shockingly, astoundingly elevated. When his bloodwork came in, the whole oncology team basically came running.
What this means for us is that on Friday, GH will be going to the hospital where a detailed image of his liver will be taken. With any luck, a blockage will be found that is causing bile to back up into his liver and elevate his bilirubin. If this is the case, a simple, endoscopic surgery will be performed to insert a stent that will reroute the bile and fix the problem. A blockage seems likely since the bilirubin level shot up so quickly and otherwise GH feels relatively OK.
There's another possibility, though. It could be that the disease has progressed so much that the liver is just giving up, that it just can't do the work it's being asked to do. If this is the case, there is no fix. There's just getting ready for the end.
I'll keep you posed.
Something New for Spring
New format, new colors. I'm still playing around with it. It's not quite there yet, but the dark, drab format of old was seriously weighing me down.
CTs and Chemo
I drove GH into downtown this morning to drop him off for a CT scan and chemo. I was in a foul mood. Part of me was more than happy to do GH the favor of driving him downtown (his car is in the shop), but part of me was annoyed by being made late to work during a busy, frustrating week. My mood was not helped by not having time for breakfast and by feeling weighed down by the oppressive knowledge that this CT scan will likely yield depressing news.
Please keep your fingers crossed for GH, Maddie, Riley, and me. Can't hurt. Might help.
Gratuitous post of GH and the Ri-Man:
Please keep your fingers crossed for GH, Maddie, Riley, and me. Can't hurt. Might help.
Gratuitous post of GH and the Ri-Man:
20 March 2007
And Now Even Work Is Lame!
While I was on maternity leave, I got passed over for a promotion. Fine. I actually quite like the New Person they hired instead of me, although it's taken me a long time to admit that. I'm not convinced that she is more qualified than me, but she is competent and fair and she does a good job working with some difficult people and advocating for her staff. Fine.
I have two job titles. My main job title is Assistant Managing Editor. (Hence why I applied to be the Managing Editor. My job was created as a training ground to be the Managing Editor, which is why it was such a slap in the face not to get the job.) I'm also a Senior Editor. Most of the work I do is more Senior Editor-ish, due to the way the company is structured and such, which is fine, although I've wanted to get more management training. I have not aggressively pursued this goal due to, oh, a few other things going on in my life. When I have tried to pursue this, I've been rebuffed.
I was told yesterday by the New Person that job descriptions are being revised (by her and her two management colleagues) and that The Assistant Managing Editor part of my title is being dropped. "That's not the work you're doing," I was told. While I recognize that this is true to a certain extent, I feel like I was given a job and what I'm doing matches that job description. Not my fault that a better job description wasn't written. Not my fault that they have not given me additional responsibility when I have asked. When I asked about taking on more management duties at my last review, my boss told me that she "doesn't need any help with her job." OK, fine. And, frankly, that title is important to me. It's very helpful to have that title as I look for Managing Editor positions elsewhere. It looks like a freakin' demotion to have the MAIN PART OF MY JOB TITLE just taken away, whoosh!
This morning I brought a copy of my job description in for my boss to look at. No one here in the office had a copy. Huh? How's that? I was told that the company has changed, that it's not the duty of the company to create a job to match what I want, and that job titles come and job titles go. I don't really know how to answer that, except that I'm looking around, so if you want to keep me, you'd better work on making my job a little more interesting. Which is basically what I said. Argh.
This is all yet another sign that I need to move on from this job. I know I'm stagnating here. The timing in my personal life is just so piss poor for making a change. After this past weekend, dealing with something like this just makes me want to crawl into a cave and sleep for a while.
I know posting about work stuff is dangerous. Don't want to get dooced and all. Not sure how long this post will stay up, but I had to vent.
I have two job titles. My main job title is Assistant Managing Editor. (Hence why I applied to be the Managing Editor. My job was created as a training ground to be the Managing Editor, which is why it was such a slap in the face not to get the job.) I'm also a Senior Editor. Most of the work I do is more Senior Editor-ish, due to the way the company is structured and such, which is fine, although I've wanted to get more management training. I have not aggressively pursued this goal due to, oh, a few other things going on in my life. When I have tried to pursue this, I've been rebuffed.
I was told yesterday by the New Person that job descriptions are being revised (by her and her two management colleagues) and that The Assistant Managing Editor part of my title is being dropped. "That's not the work you're doing," I was told. While I recognize that this is true to a certain extent, I feel like I was given a job and what I'm doing matches that job description. Not my fault that a better job description wasn't written. Not my fault that they have not given me additional responsibility when I have asked. When I asked about taking on more management duties at my last review, my boss told me that she "doesn't need any help with her job." OK, fine. And, frankly, that title is important to me. It's very helpful to have that title as I look for Managing Editor positions elsewhere. It looks like a freakin' demotion to have the MAIN PART OF MY JOB TITLE just taken away, whoosh!
This morning I brought a copy of my job description in for my boss to look at. No one here in the office had a copy. Huh? How's that? I was told that the company has changed, that it's not the duty of the company to create a job to match what I want, and that job titles come and job titles go. I don't really know how to answer that, except that I'm looking around, so if you want to keep me, you'd better work on making my job a little more interesting. Which is basically what I said. Argh.
This is all yet another sign that I need to move on from this job. I know I'm stagnating here. The timing in my personal life is just so piss poor for making a change. After this past weekend, dealing with something like this just makes me want to crawl into a cave and sleep for a while.
I know posting about work stuff is dangerous. Don't want to get dooced and all. Not sure how long this post will stay up, but I had to vent.
19 March 2007
Weekend Recap
Jeepers cripes but it was a long weekend. It was a weekend that I was glad to see come to an end. I was happy to wake up and realize that it was Monday. How lame is that?
Friday (which, since I "work" from home, is part of my weekend) was a mess of a day: snow, slush, sleet, a return of the winter that had oh-so-foolishly thought was over. We had many plans for Friday, including a walk with a friend, a visit from Early Intervention, and a visit from another friend, but all got canceled for one reason or another. So I was stuck inside, all day, with the Little Dictators. Playing with the same toys. Over and over. As the snow fell. Add to this that GH spent much of the day napping, and it was One Dull Day at our house. To add insult to injury, once the kids were in bed I had to shovel our stairs and driveway because the snow was forecast to turn to rain and I wanted to get to it before it turned into a heavy, wet, icy mess.
An upside ending: we ordered pizza for dinner. Funny bit: it gets delivered while I'm shoveling. I hear the delivery guy say to GH at the door, "What's your wife doing out there shoveling? Why you do that to her? You should be out there, man!" Oh, if he only knew. Other funny bit: selfsame delivery guy says to me on his way out, "This weather, it's crazy. Just yesterday I'm out in my shorts, my wifebeater, and now this. Crazy."
Saturday was more of the same. The weather was better, but there was a veneer of icy slop to be shoveled, kids who didn't want to nap, husbands who did. We did go to the mall in the late afternoon, where I purchased the best bubbles in the world at Gymboree. (I then spilled them on Sunday. It was one of those weekends.) I also tried on pants that I could not button and felt fat and flabby.
The upside ending to Saturday was that I went out to dinner with a friend who I had not seen in a long time. That was nice.
Sunday was the crowning glory of our weekend. Things started off well when the kids took a great morning nap, and the weather was better, so we got out for a walk. Then the day just dragged on. A friend had been planning to come over for lunch and to meet the babies, but she was sick and had to cancel. We had talked about going to dim sum, but GH decided he didn't feel like it. Even when GH was not napping, he was kind of a shell of himself, present, but not present if you know what I mean. I knew that the news from chemo on Wednesday had hit him hard, and I could tell that it was affecting his attitude and demeanor. He was impatient with the babies, and I sensed that spending time with them felt like a chore. He was tired. He was in pain. (Turns out he's been having pretty constant abdominal pain recently, something I wasn't aware of.) We noticed that his eyes looked yellow, indicating jaundice, meaning that his liver function is only getting worse.
Finally, when we were doing the babies' final feeding before baths and bed, I said something. I told him that I was worried, that he seemed so unhappy, that I felt like the air of joy we work hard to cultivate had left our house. I asked if he felt the same and how we could work to get it back, because it was affecting my attitude and I also felt like the babies could sense it. He agreed that things felt bleak, but he wasn't sure what to do.
After we put the babies to bed, we went our separate ways to do a few chores and I found him at our desk, crying. We had a good cry together, acknowledging how scared we are of what's to come. GH is so angry about what he might miss with the babies, so mad that all the plans he has for things he wants to do with them might not come to pass. He said that he does feel the distance he puts there, a distance that comes in part from the fear of the future. I encouraged him to talk to the babies, to tell them about his plans. Maddie and Riley love him so much. They light up when he walks into the room and laugh at his slapstick play. Even if they won't retain what he tells them, I think it's good for them to hear what GH sees in their future together, no matter what happens.
There's no upside ending to Sunday. We ate dinner. We went to bed.
One of my ways of coping with our situation is to carry on with life as normally as possible. I don't do this out of denial, but rather because I don't know what the alternative is. Mope? Cry? I do those things sometimes, but I can't do them all the time. I just need to keep going. Those few-and-far-between nights that we spend talking and thinking about the gravity of our reality are so exhausting for me.
I miss my family. We've all had colds since the beginning of time. GH is getting worse. It's getting harder and harder for me to find joy and stay positive. I feel the resistance, anger, and resentment about knowing that I need to look at how I can change myself and my attitudes when what I want is for our situation to change. I wonder sometimes what our life would be like without cancer. It's a futile exercise, but hard to resist.
Friday (which, since I "work" from home, is part of my weekend) was a mess of a day: snow, slush, sleet, a return of the winter that had oh-so-foolishly thought was over. We had many plans for Friday, including a walk with a friend, a visit from Early Intervention, and a visit from another friend, but all got canceled for one reason or another. So I was stuck inside, all day, with the Little Dictators. Playing with the same toys. Over and over. As the snow fell. Add to this that GH spent much of the day napping, and it was One Dull Day at our house. To add insult to injury, once the kids were in bed I had to shovel our stairs and driveway because the snow was forecast to turn to rain and I wanted to get to it before it turned into a heavy, wet, icy mess.
An upside ending: we ordered pizza for dinner. Funny bit: it gets delivered while I'm shoveling. I hear the delivery guy say to GH at the door, "What's your wife doing out there shoveling? Why you do that to her? You should be out there, man!" Oh, if he only knew. Other funny bit: selfsame delivery guy says to me on his way out, "This weather, it's crazy. Just yesterday I'm out in my shorts, my wifebeater, and now this. Crazy."
Saturday was more of the same. The weather was better, but there was a veneer of icy slop to be shoveled, kids who didn't want to nap, husbands who did. We did go to the mall in the late afternoon, where I purchased the best bubbles in the world at Gymboree. (I then spilled them on Sunday. It was one of those weekends.) I also tried on pants that I could not button and felt fat and flabby.
The upside ending to Saturday was that I went out to dinner with a friend who I had not seen in a long time. That was nice.
Sunday was the crowning glory of our weekend. Things started off well when the kids took a great morning nap, and the weather was better, so we got out for a walk. Then the day just dragged on. A friend had been planning to come over for lunch and to meet the babies, but she was sick and had to cancel. We had talked about going to dim sum, but GH decided he didn't feel like it. Even when GH was not napping, he was kind of a shell of himself, present, but not present if you know what I mean. I knew that the news from chemo on Wednesday had hit him hard, and I could tell that it was affecting his attitude and demeanor. He was impatient with the babies, and I sensed that spending time with them felt like a chore. He was tired. He was in pain. (Turns out he's been having pretty constant abdominal pain recently, something I wasn't aware of.) We noticed that his eyes looked yellow, indicating jaundice, meaning that his liver function is only getting worse.
Finally, when we were doing the babies' final feeding before baths and bed, I said something. I told him that I was worried, that he seemed so unhappy, that I felt like the air of joy we work hard to cultivate had left our house. I asked if he felt the same and how we could work to get it back, because it was affecting my attitude and I also felt like the babies could sense it. He agreed that things felt bleak, but he wasn't sure what to do.
After we put the babies to bed, we went our separate ways to do a few chores and I found him at our desk, crying. We had a good cry together, acknowledging how scared we are of what's to come. GH is so angry about what he might miss with the babies, so mad that all the plans he has for things he wants to do with them might not come to pass. He said that he does feel the distance he puts there, a distance that comes in part from the fear of the future. I encouraged him to talk to the babies, to tell them about his plans. Maddie and Riley love him so much. They light up when he walks into the room and laugh at his slapstick play. Even if they won't retain what he tells them, I think it's good for them to hear what GH sees in their future together, no matter what happens.
There's no upside ending to Sunday. We ate dinner. We went to bed.
One of my ways of coping with our situation is to carry on with life as normally as possible. I don't do this out of denial, but rather because I don't know what the alternative is. Mope? Cry? I do those things sometimes, but I can't do them all the time. I just need to keep going. Those few-and-far-between nights that we spend talking and thinking about the gravity of our reality are so exhausting for me.
I miss my family. We've all had colds since the beginning of time. GH is getting worse. It's getting harder and harder for me to find joy and stay positive. I feel the resistance, anger, and resentment about knowing that I need to look at how I can change myself and my attitudes when what I want is for our situation to change. I wonder sometimes what our life would be like without cancer. It's a futile exercise, but hard to resist.
15 March 2007
Thai-Style Chicken Soup at Home
As requested, here's the recipe. Hope you like it as much as I did!
THAI-STYLE CHICKEN SOUP AT HOME
from the Jan/Feb 2007 Cook's Illustrated
3 T. fresh lime juice
2 t. Thai red curry paste
1 t. vegetable oil
3 lemon grass stalks, tough outer leaves removed, bottom 5 inches halved lengthwise and sliced thin crosswise (Cook's specifically says not to use dried or jarred lemongrass, but I couldn't find fresh at any stores near our house so I ended up using 1 t. dried. It seemed fine to me, although I'm sure fresh is better.)
3 large shallots, chopped
8 springs fresh cilantro, chopped coarse
3 T. fish sauce, divided
4 c. low-sodium chicken broth
2 cans (14 oz. each) coconut milk (I used one can full-fat and one can low-fat. I think I'd use two cans low-fat next time.)
1 T. sugar
8 oz. white mushrooms, sliced thin
1 lb. boneless, skinless chicken breasts, cut in half then into thin slices
For serving: fresh cilantro leaves, diced serrano chile, minced scallion, lime wedges
1. Combine lime juice, curry paste, and 2 T. fish sauce in small bowl. Set aside.
2. Heat oil in large saucepan over high heat. Add lemon grass, shallots, cilantro, and remaining 1 T. fish sauce. Saute until veggies are soft but not brown.
3. Stir in chicken broth and one can of coconut milk. Bring to simmer over high heat, then cover, reduce heat to low, and simmer for 10 minutes to blend flavors.
4. Pour broth through fine mesh strainer and discard solids. Rinse saucepan and return broth mixture to pan.
5. Put pan over medium-high heat. Add remaining can coconut milk and sugar; bring to simmer.
6. Add mushrooms; cook until tender (about 2 minutes).
7. Add chicken and cook, stirring constantly, until just cooked through (1 to 3 minutes).
8. Remove soup from heat. Stir in lime juice/curry paste mixture. Serve topped with serrano chiles, scallion, cilantro, and lime wedges.
As suggested by the magazine (and because my Korean husband eats everything with rice), we served this in big bowls over rice. Enjoy!
THAI-STYLE CHICKEN SOUP AT HOME
from the Jan/Feb 2007 Cook's Illustrated
3 T. fresh lime juice
2 t. Thai red curry paste
1 t. vegetable oil
3 lemon grass stalks, tough outer leaves removed, bottom 5 inches halved lengthwise and sliced thin crosswise (Cook's specifically says not to use dried or jarred lemongrass, but I couldn't find fresh at any stores near our house so I ended up using 1 t. dried. It seemed fine to me, although I'm sure fresh is better.)
3 large shallots, chopped
8 springs fresh cilantro, chopped coarse
3 T. fish sauce, divided
4 c. low-sodium chicken broth
2 cans (14 oz. each) coconut milk (I used one can full-fat and one can low-fat. I think I'd use two cans low-fat next time.)
1 T. sugar
8 oz. white mushrooms, sliced thin
1 lb. boneless, skinless chicken breasts, cut in half then into thin slices
For serving: fresh cilantro leaves, diced serrano chile, minced scallion, lime wedges
1. Combine lime juice, curry paste, and 2 T. fish sauce in small bowl. Set aside.
2. Heat oil in large saucepan over high heat. Add lemon grass, shallots, cilantro, and remaining 1 T. fish sauce. Saute until veggies are soft but not brown.
3. Stir in chicken broth and one can of coconut milk. Bring to simmer over high heat, then cover, reduce heat to low, and simmer for 10 minutes to blend flavors.
4. Pour broth through fine mesh strainer and discard solids. Rinse saucepan and return broth mixture to pan.
5. Put pan over medium-high heat. Add remaining can coconut milk and sugar; bring to simmer.
6. Add mushrooms; cook until tender (about 2 minutes).
7. Add chicken and cook, stirring constantly, until just cooked through (1 to 3 minutes).
8. Remove soup from heat. Stir in lime juice/curry paste mixture. Serve topped with serrano chiles, scallion, cilantro, and lime wedges.
As suggested by the magazine (and because my Korean husband eats everything with rice), we served this in big bowls over rice. Enjoy!
The ABC Meme
I've been tagged by Shabby Doll.
A- Available or single? Neither one.
B- Best friend? Erk, since freshman year in college
C- Cake or pie? Depends on the day. I love cherry pie, and I love most cakes with a particular fondness for chocolate cake that has been well-chilled.
D- Drink of choice? Water, room temperature, no ice
E- Essential item? Reading material
F- Favorite color? Orange
G- Gummi bears or worms? Both. I love gummy candy.
H- Hometown? Portland, OR
I- Indulgence? I buy myself a coffee every day on the way to work even though I know that if I saved all that money and invested it I could retire a millionaire at age 42 or something.
J- January or February? January
K- Kids/pets and names? Boy/girl twins Madeleine and Riley, nine months old on 22 June 2006; cat named Dinner, 12 years old this past March
L- Life is incomplete without…? My family. Books. Good food. Friends. Hot baths. Ice cream. I could keep going . . .
M- Marriage date or other important anniversary? 14 August 2004 (wedding)
N- Number of siblings? No blood siblings. I have one stepbrother.
O- Oranges or apples? I like both, but I prefer apples.
P- Phobias/Fears? The dark.
Q- Favorite quote? "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." (I guess that's really a saying, not a quote, but good enough.)
R- Reasons to smile? Seeing the twins for the first time every morning. Sunny days. Ugh, I sound like Pollyanna.
S- Season? Spring
T- Tag 3 people? This meme has been around for a while, so I'm going to let people self-tag.
U- Unknown fact about you? Like many little girls, I was way into the horse thing in early grade school. I actually took riding lessons and rode in horse shows and stuff. I never had my own horse, though. Then in fifth grade I broke my foot (walking up stairs, not in a riding accident!) and never went back to riding.
V- Vegetable you hate? That curly stuff they put in salads. What's it called? Frisee or somesuch?
W-Worst habit? A tendency towards the judgmental.
X- Xrays you’ve had? Left foot. Teeth.
Y- Your favorite foods? Ice cream.
Z- Zodiac? Capricorn
A- Available or single? Neither one.
B- Best friend? Erk, since freshman year in college
C- Cake or pie? Depends on the day. I love cherry pie, and I love most cakes with a particular fondness for chocolate cake that has been well-chilled.
D- Drink of choice? Water, room temperature, no ice
E- Essential item? Reading material
F- Favorite color? Orange
G- Gummi bears or worms? Both. I love gummy candy.
H- Hometown? Portland, OR
I- Indulgence? I buy myself a coffee every day on the way to work even though I know that if I saved all that money and invested it I could retire a millionaire at age 42 or something.
J- January or February? January
K- Kids/pets and names? Boy/girl twins Madeleine and Riley, nine months old on 22 June 2006; cat named Dinner, 12 years old this past March
L- Life is incomplete without…? My family. Books. Good food. Friends. Hot baths. Ice cream. I could keep going . . .
M- Marriage date or other important anniversary? 14 August 2004 (wedding)
N- Number of siblings? No blood siblings. I have one stepbrother.
O- Oranges or apples? I like both, but I prefer apples.
P- Phobias/Fears? The dark.
Q- Favorite quote? "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." (I guess that's really a saying, not a quote, but good enough.)
R- Reasons to smile? Seeing the twins for the first time every morning. Sunny days. Ugh, I sound like Pollyanna.
S- Season? Spring
T- Tag 3 people? This meme has been around for a while, so I'm going to let people self-tag.
U- Unknown fact about you? Like many little girls, I was way into the horse thing in early grade school. I actually took riding lessons and rode in horse shows and stuff. I never had my own horse, though. Then in fifth grade I broke my foot (walking up stairs, not in a riding accident!) and never went back to riding.
V- Vegetable you hate? That curly stuff they put in salads. What's it called? Frisee or somesuch?
W-Worst habit? A tendency towards the judgmental.
X- Xrays you’ve had? Left foot. Teeth.
Y- Your favorite foods? Ice cream.
Z- Zodiac? Capricorn
Help Me Take My Mind off Cancer
GH and I are ever-so-vaguely considering a vacation to Puerto Rico. The wise Moxie and her readers recommend it, and it's a place we'd talked about going in the past. This would likely be a vacation avec enfants, although also likely avec a grandfather, so we'd have some time for grown-up outings. Not exactly sure when we'd go, but no matter when, our vacation goal is mostly relaxation, but we'd like to go someplace with interesting sights and places that we could visit with the kids, too.
Any of you been to Puerto Rico? What did you think?
Other suggestions?
Any of you been to Puerto Rico? What did you think?
Other suggestions?
14 March 2007
From the Cancer Front
Just off the phone with GH who was giving me his weekly update from the chemo trenches.
The news was not good. It was not terrible, but it was not good.
He's been on a new chemo regimen for a little while, maybe two months. He gets a weekly dose of Erbitux. It's been working pretty well, with tumor marker numbers dropping steadily if not dramatically.
Until this week.
Tumor marker numbers are up. Liver function numbers are up. He's been itchy and tired. Bah.
Why is it that something good always seems to be balanced out by something bad? I've been feeling so upbeat lately with the change in the weather, the twins making the transition to sleeping in their own cribs, cooking, running, spending time with GH in the evenings, etc. Things felt normal there for a week or two. Blissfully, wonderfully normal. We had such an awesome day with the babies yesterday, one of those perfect days where they were happy, funny, laughing, all day. I didn't want to put them to bed they were so much fun.
Now this.
I know it's not the worst news we could get, but it's so incredibly emotionally draining to change treatments and watch and wait for things to get better. I'm just getting my emotional energy back after so many weeks of someone in the house being sick and after the tempestuous dealings with my mother-in-law. I want to devote this returned energy to fun times with GH and the babies. To sunny springtime walks. To day trips to the North Shore like we took this past Saturday. I don't want to spend this newfound energy on bolstering myself through the stress of a treatment change. The treatments are just a postponing of the inevitable. One of these times, things aren't going to get better, and then what?
If GH's oncologist does recommend a change in treatment plans, we're probably looking at clinical trials. GH has already been through the standard treatments--and then some--for pancreatic cancer. His elevated liver function could disqualify him for trials, as could his low platelets. We'll cross those bridges when we come to them.
I try not to live my life too far in the future. I try to stay grounded in the day-to-day. News like this makes it hard not to be ruled by the fear of what the future could bring.
The news was not good. It was not terrible, but it was not good.
He's been on a new chemo regimen for a little while, maybe two months. He gets a weekly dose of Erbitux. It's been working pretty well, with tumor marker numbers dropping steadily if not dramatically.
Until this week.
Tumor marker numbers are up. Liver function numbers are up. He's been itchy and tired. Bah.
Why is it that something good always seems to be balanced out by something bad? I've been feeling so upbeat lately with the change in the weather, the twins making the transition to sleeping in their own cribs, cooking, running, spending time with GH in the evenings, etc. Things felt normal there for a week or two. Blissfully, wonderfully normal. We had such an awesome day with the babies yesterday, one of those perfect days where they were happy, funny, laughing, all day. I didn't want to put them to bed they were so much fun.
Now this.
I know it's not the worst news we could get, but it's so incredibly emotionally draining to change treatments and watch and wait for things to get better. I'm just getting my emotional energy back after so many weeks of someone in the house being sick and after the tempestuous dealings with my mother-in-law. I want to devote this returned energy to fun times with GH and the babies. To sunny springtime walks. To day trips to the North Shore like we took this past Saturday. I don't want to spend this newfound energy on bolstering myself through the stress of a treatment change. The treatments are just a postponing of the inevitable. One of these times, things aren't going to get better, and then what?
If GH's oncologist does recommend a change in treatment plans, we're probably looking at clinical trials. GH has already been through the standard treatments--and then some--for pancreatic cancer. His elevated liver function could disqualify him for trials, as could his low platelets. We'll cross those bridges when we come to them.
I try not to live my life too far in the future. I try to stay grounded in the day-to-day. News like this makes it hard not to be ruled by the fear of what the future could bring.
More Food
Inspired by noodles and beer night, I cooked again yesterday after the twins went down. This time, I tried a new Cook's Illustrated recipe, "Thai Chicken Soup at Home," a use-stuff-from-your-pantry version of the coconut milk-based soup that's always on the menu at Thai places. I'm both a whore for Cook's and a whore for this soup, so I could hardly resist the siren call.
Cook's recipes can be a bit fussy, but they usually yield excellent results. This particular recipe, however, was relatively straightforward. It went together in about 45 minutes and it was everything I wanted it to be. MMM. No beer this time, but a nice glass of wine made an excellent accompaniment. I want to start keeping a running tab of these meals that go together quickly enough that I can make them after the kids go to bed and still have some time left to enjoy my evening before I collapse into a heap.
I'll post the soup recipe if there's interest.
Not food-related: the twins slept well again for night 2 of solo cribs. They were up and yammering by 6:45 this time, which is fine by me.
Cook's recipes can be a bit fussy, but they usually yield excellent results. This particular recipe, however, was relatively straightforward. It went together in about 45 minutes and it was everything I wanted it to be. MMM. No beer this time, but a nice glass of wine made an excellent accompaniment. I want to start keeping a running tab of these meals that go together quickly enough that I can make them after the kids go to bed and still have some time left to enjoy my evening before I collapse into a heap.
I'll post the soup recipe if there's interest.
Not food-related: the twins slept well again for night 2 of solo cribs. They were up and yammering by 6:45 this time, which is fine by me.
13 March 2007
Success
The twins did great on their first night of solo sleeping. In fact, they slept better than ever. Riley woke up a couple of times in the night and talked to himself a bit, but went right back to sleep on his own. I didn't hear a peep from Maddie. I had to wake them both up at 7:15 a.m. so that we could all get ready and get to day care on time. Good job, babies!
12 March 2007
The Inevitable
No, nothing cancer-related, thank goodness. Nothing so serious as that.
Tonight is the first night that Maddie and Riley are spending in separate cribs.
They will be nine months old in less than ten days, so they have already shared a crib much longer than many twins do. They've been able to do this because they don't crawl yet and until very recently, neither of them rolled over, at least not while sleeping. I've seen them both roll front to back, but they don't do it often, and I've actually never seen either of them roll back to front. A couple of weeks ago, though, I started finding Riley on his tummy when I went to get them up in the morning. So I knew he could make the back-to-front move, I'd just never seen it, and still haven't.
Even once Ri-Man started rolling over, there still didn't initially seem to be any rush to put them in their own cribs. They were still sharing space just fine. Their room is tiny and although we had a second crib, I was not highly motivated to spend my precious free time assembling it. Also, and this is so vain and lame, the crib is ugly. I got it for free through my moms of twins club and I've been hesitant to put it up because, well, it's ugly. I may be cheap, but I'm also vain. Ahem.
Well, Sunday morning at about 6:00 (which of course is really 5:00 due to Daylight Savings Time), I hear Madeleine sobbing on the monitor. She never cries in the night unless there's a real problem. I head into their room and discover Riley all up in Maddie's grill, grabbing at her face. He wanted to play, she wanted to sleep, poor thing. I put Riley back on his side, explained that it was STILL NIGHT, gave Maddie her binkie, and closed the door. They both went back to sleep until 8:00, but that night was my signal that it was time for crib #2 to make its appearance.
We meant to put the crib up yesterday, but time got away from us. This morning, I found Riley on Maddie's side, using her legs as a pillow. She didn't seem to mind. That was certainly preferable to having her eyes gouged out.
Tonight, when I got home, we gave the twins their dinner then put them in crib #1 to play while we assembled crib #2. Of course, free crib #2 came with no instructions for assembly, so that took us a while, and the kids were impatient. We finally got it done and then got them ready for bed.
They are now sleeping in their separate cribs. Ri-Man got crib #2 because he can pull to standing and when we assembled it, we put the mattress in the lowest position.
We still need to lower the mattress in crib #1. We positioned the cribs so that the twins will be able to see each other. Honestly, I don't think Maddie will care one way or another, but I think Riley is going to miss his sister/pillow/scratching post. For the time being, he seems more dependent on her than she does on him. When I had him home sick last week, he didn't crack a smile all day until he saw Maddie when she came home from day care. And when she was home sick and Riley went to day care, the women who run our day care center said that he was looking for Maddie all day.
I hope he isn't too upset. And I hope she gets a good night's sleep. It's the end of an era.
Tonight is the first night that Maddie and Riley are spending in separate cribs.
They will be nine months old in less than ten days, so they have already shared a crib much longer than many twins do. They've been able to do this because they don't crawl yet and until very recently, neither of them rolled over, at least not while sleeping. I've seen them both roll front to back, but they don't do it often, and I've actually never seen either of them roll back to front. A couple of weeks ago, though, I started finding Riley on his tummy when I went to get them up in the morning. So I knew he could make the back-to-front move, I'd just never seen it, and still haven't.
Even once Ri-Man started rolling over, there still didn't initially seem to be any rush to put them in their own cribs. They were still sharing space just fine. Their room is tiny and although we had a second crib, I was not highly motivated to spend my precious free time assembling it. Also, and this is so vain and lame, the crib is ugly. I got it for free through my moms of twins club and I've been hesitant to put it up because, well, it's ugly. I may be cheap, but I'm also vain. Ahem.
Well, Sunday morning at about 6:00 (which of course is really 5:00 due to Daylight Savings Time), I hear Madeleine sobbing on the monitor. She never cries in the night unless there's a real problem. I head into their room and discover Riley all up in Maddie's grill, grabbing at her face. He wanted to play, she wanted to sleep, poor thing. I put Riley back on his side, explained that it was STILL NIGHT, gave Maddie her binkie, and closed the door. They both went back to sleep until 8:00, but that night was my signal that it was time for crib #2 to make its appearance.
We meant to put the crib up yesterday, but time got away from us. This morning, I found Riley on Maddie's side, using her legs as a pillow. She didn't seem to mind. That was certainly preferable to having her eyes gouged out.
Tonight, when I got home, we gave the twins their dinner then put them in crib #1 to play while we assembled crib #2. Of course, free crib #2 came with no instructions for assembly, so that took us a while, and the kids were impatient. We finally got it done and then got them ready for bed.
They are now sleeping in their separate cribs. Ri-Man got crib #2 because he can pull to standing and when we assembled it, we put the mattress in the lowest position.
We still need to lower the mattress in crib #1. We positioned the cribs so that the twins will be able to see each other. Honestly, I don't think Maddie will care one way or another, but I think Riley is going to miss his sister/pillow/scratching post. For the time being, he seems more dependent on her than she does on him. When I had him home sick last week, he didn't crack a smile all day until he saw Maddie when she came home from day care. And when she was home sick and Riley went to day care, the women who run our day care center said that he was looking for Maddie all day.
I hope he isn't too upset. And I hope she gets a good night's sleep. It's the end of an era.
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