Well, it's the last day of our Thanksgiving vacation. Today is the best day weather-wise, for sure. It's beautiful. And, as much as I hate winter, I'm surprisingly happy that it's somewhat cold. The warm weather in November felt kinda creepy and even the flies seemed confused as to why they were still alive.
Despite the earlier mishaps on this trip, it's been great. Relaxing, beautiful scenery and lots of food and drinks, as I'd hoped. It's been great to be with our little family and our friends. C has been so great. Her language is just developing so much every minute, and she's becoming such a sweet little person. And I just love it when she sings her little songs. I am really smitten with this kid.
So, back to the mainland today. Then, on Tuesday, I am back to Phase 2 of this whole process. It's a strange time right now. I'm about to go back to work, but I won't fully be mentally or physically there. I'm about to start treatment and I'm not entirely sure what to expect. And, then there's Christmas which is alarmingly early-feeling this year. So, it doesn't feel like I'm heading back to "the grind" as I normally would after these types of breaks. It's definitely back to something, I'm just not exactly sure what.
Sunday, November 29, 2009
Friday, November 27, 2009
minor trauma thanksgiving
Oh boy. Well, it wasn't the most relaxing Thanksgiving I've ever had.
It started out great. We even got through a really excellent meal. But when I was putting C to bed she fell off the big bed. I would normally not be totally freaked by this, but the silent scream lasted for a while. Then when I felt her head there was instantly a huge lump and it was bleeding a little bit. I rushed her downstairs and D tried to put ice on it, but that was hurting her, so she was resisting.
I felt absolutely awful. For one thing, she usually gets over bumps and scrapes pretty quickly, but she wasn't this time. And whenever there is blood involved, that alarms me. Bleeding from the head is never good. And, of course I had a lot of guilt b/c I should have prevented the whole thing. I think the biggest thing though is that it's always worrisome when someone hits there head.
I was pretty upset and worried sick for the rest of the night. It was certainly a freakout.
In general, I am more of a worrier than I used to be. I think part of it is just being a mom. I think my complete freakout at last night's situation though was in part due to my recent realization recently that bad things can happen to us. While I guess I should have realized this before, I think I'm more often mentally preparing for the worst these days (if you can call a freakout "preparing".)
She didn't have any of those scary head-trauma signs, thank god. And she (and her bump) seem much better today.
Did I mention that C also has a cold, was constipated, and was hit in the face with a hula hoop yesterday? Poor kid. I don't think she had much to be thankful for yesterday, but she was a trooper.
It started out great. We even got through a really excellent meal. But when I was putting C to bed she fell off the big bed. I would normally not be totally freaked by this, but the silent scream lasted for a while. Then when I felt her head there was instantly a huge lump and it was bleeding a little bit. I rushed her downstairs and D tried to put ice on it, but that was hurting her, so she was resisting.
I felt absolutely awful. For one thing, she usually gets over bumps and scrapes pretty quickly, but she wasn't this time. And whenever there is blood involved, that alarms me. Bleeding from the head is never good. And, of course I had a lot of guilt b/c I should have prevented the whole thing. I think the biggest thing though is that it's always worrisome when someone hits there head.
I was pretty upset and worried sick for the rest of the night. It was certainly a freakout.
In general, I am more of a worrier than I used to be. I think part of it is just being a mom. I think my complete freakout at last night's situation though was in part due to my recent realization recently that bad things can happen to us. While I guess I should have realized this before, I think I'm more often mentally preparing for the worst these days (if you can call a freakout "preparing".)
She didn't have any of those scary head-trauma signs, thank god. And she (and her bump) seem much better today.
Did I mention that C also has a cold, was constipated, and was hit in the face with a hula hoop yesterday? Poor kid. I don't think she had much to be thankful for yesterday, but she was a trooper.
Tuesday, November 24, 2009
Flu-sies
OK, it's true. I dropped the ball AGAIN on the posting-every-day thing. Still, I am cutting myself some slack (even if you're not) because I've posted most days. And I will bring my laptop to the Vineyard over Thanksgiving and attempt to post there. I have no idea if they have Wifi or not, but we'll find out later, now won't we?
I am very excited about this trip because it will be a nice Thanksgiving on an island with friends. And there will be relaxation and fun and food and alcohol. Somehow at the liquor store the other day we scored a magnum of the Spanish "sparkling wine" that we served at our wedding. For $9.99! And this stuff is good. I'm sure you don't believe me, but it's true! I think we might need to get another one for New Year's...
Here's what I'm worried about:
C had a sniffle and a little cough this morning and was in a clingy mood. Those are never good signs. The last time a big group of us all stayed together in the winter, we all got a stomach bug and it had a domino effect of disastrous proportions.
It wouldn't exactly be pleasant if C was sick for this trip. For one, she wouldn't have much fun and enjoy playing with her buddy S to the fullest. For two, she wouldn't be her delightful self, and I always prefer people to see the fun, playful side of her rather than the sick, cranky, lethargic side of her. And, of course, I don't want anyone else to get sick.
So, please luck fairy, smile upon us and let this sniffle evaporate into thin air. I promise to be a good girl!
In good news, I finally heard that C will be able to get the flu shots on Monday. Now I just have to worry about getting myself the flu shots. While my PCP agreed that it's important for me to get the shots so I don't miss any of my treatments, she had nothing to offer me. This is all getting pretty ridiculous. I'm surprised there isn't a flu shot black market cropping up. I can see the dealers: "I'm holding oxycontin, crystal meth and flu shots...." And is everyone sick of calling, obsessing and talking about the dearth of flu shots yet? I sure as hell am. I guess it's still better than being sick of everyone having the flu. But it's just given New Englanders another thing to b*tch about for a good part of the winter besides the weather. And I don't think we actually needed another thing.
I am very excited about this trip because it will be a nice Thanksgiving on an island with friends. And there will be relaxation and fun and food and alcohol. Somehow at the liquor store the other day we scored a magnum of the Spanish "sparkling wine" that we served at our wedding. For $9.99! And this stuff is good. I'm sure you don't believe me, but it's true! I think we might need to get another one for New Year's...
Here's what I'm worried about:
C had a sniffle and a little cough this morning and was in a clingy mood. Those are never good signs. The last time a big group of us all stayed together in the winter, we all got a stomach bug and it had a domino effect of disastrous proportions.
It wouldn't exactly be pleasant if C was sick for this trip. For one, she wouldn't have much fun and enjoy playing with her buddy S to the fullest. For two, she wouldn't be her delightful self, and I always prefer people to see the fun, playful side of her rather than the sick, cranky, lethargic side of her. And, of course, I don't want anyone else to get sick.
So, please luck fairy, smile upon us and let this sniffle evaporate into thin air. I promise to be a good girl!
In good news, I finally heard that C will be able to get the flu shots on Monday. Now I just have to worry about getting myself the flu shots. While my PCP agreed that it's important for me to get the shots so I don't miss any of my treatments, she had nothing to offer me. This is all getting pretty ridiculous. I'm surprised there isn't a flu shot black market cropping up. I can see the dealers: "I'm holding oxycontin, crystal meth and flu shots...." And is everyone sick of calling, obsessing and talking about the dearth of flu shots yet? I sure as hell am. I guess it's still better than being sick of everyone having the flu. But it's just given New Englanders another thing to b*tch about for a good part of the winter besides the weather. And I don't think we actually needed another thing.
Sunday, November 22, 2009
You and your beeswax
OK, I blew it again with posting yesterday. Something about staying out late and having a tad too much wine erases the whole blog commitment from my memory. (Thanks M & Y though, we had a lot of fun!) I like to think of it this way: I've spared you a pretty shoddy post.
So lately there is a trend emerging with some of my friends who seem to be feeling a little afraid to complain too much about the crapola going on in their lives because they perceive it in relation to my cancer. I think they don't want to be seen as whiners when I'm going through something relatively major. I say to them, "Bring on your crap." I am still getting p*ssed about little things at times. Sometimes the day to day grind is unbearable and I won't judge you for whining.
If hearing my news gave you some perspective and made you feel like you could blow off something that was annoying you, then that's great. Just don't feel that you shouldn't express yourself. We're all in a different place and time in our lives. Sometimes the thought of spending Thanksgiving with your in-laws feels worse than spinal surgery. And it very well might be. I get that.
That said, lately I've heard of some really immature behavior by some non-friends. People who are just whipping up a whole mess of drama and self-pity over nothing (in my humble opinion). I'd really like to just shake some of these people. Hard. And say, "Get a grip! Grow up!' Not even so much relative to my situation but in relation to Chordoma stories I've recently heard, or relative to people who are really struggling in this economy.
But I promise I will not get physical with any of them. I will just be here minding my own beeswax.
So lately there is a trend emerging with some of my friends who seem to be feeling a little afraid to complain too much about the crapola going on in their lives because they perceive it in relation to my cancer. I think they don't want to be seen as whiners when I'm going through something relatively major. I say to them, "Bring on your crap." I am still getting p*ssed about little things at times. Sometimes the day to day grind is unbearable and I won't judge you for whining.
If hearing my news gave you some perspective and made you feel like you could blow off something that was annoying you, then that's great. Just don't feel that you shouldn't express yourself. We're all in a different place and time in our lives. Sometimes the thought of spending Thanksgiving with your in-laws feels worse than spinal surgery. And it very well might be. I get that.
That said, lately I've heard of some really immature behavior by some non-friends. People who are just whipping up a whole mess of drama and self-pity over nothing (in my humble opinion). I'd really like to just shake some of these people. Hard. And say, "Get a grip! Grow up!' Not even so much relative to my situation but in relation to Chordoma stories I've recently heard, or relative to people who are really struggling in this economy.
But I promise I will not get physical with any of them. I will just be here minding my own beeswax.
Friday, November 20, 2009
If you don't laugh....
I already told you about my CT scan on Tuesday for the research study. I came home early from a business trip and missed a client meeting so I could go to that scan.
Welp, there was a message on my phone today from the Radiation Oncologist. It turns out that somehow (and even he admits he doesn't know how this possibly happened!) all the data got wiped out from the scan. So it was essentially a waste of time.
Trust me, I was pretty irked. I wanted to muster up more pissed-offedness, but I couldn't when I called him back. He was obviously completely embarassed. He said he had called to complain to the head of nuclear medicine and he also said he called the equipment manufacturer.
So, my options were to give up on the project altogether, or to do it all over again. Now, it's not some horrendous painful thing, but it's not exactly Sunday brunch either. Here's what it involves:
First, a pregnancy test to make sure they don't nuclearize some poor fetus
Wait 1 hour for pregnancy test results
Get injection of a scary-looking nuclear medicine (It is kept in a cement vial-so not kidding)
Wait about 2 hours for medicine to make it's way around your insides
Get into CT scan machine.
Lie on back with arms over head for LONG periods of time
I don't typically lie on my back with my arms up over my head for long periods and on Tuesday I got to the point where my arms felt like they were falling asleep and I was DYING to move them.
So, while this is not the worst experience in the world, it's also not one I was anxious to repeat. Especially for no bloody good reason. And no, software malfunction is not a good reason! (And you also have to ask yourself if software malfunction is code for, "someone f-ed up")
But I will do it again for the sake of research. Someone else probably did something similar for my benefit in the past, right?
Still I am beginning to think that the luck fairy is not so happy with me. But I feel superstitious even saying that. Sorry luck fairy! I like you!
Welp, there was a message on my phone today from the Radiation Oncologist. It turns out that somehow (and even he admits he doesn't know how this possibly happened!) all the data got wiped out from the scan. So it was essentially a waste of time.
Trust me, I was pretty irked. I wanted to muster up more pissed-offedness, but I couldn't when I called him back. He was obviously completely embarassed. He said he had called to complain to the head of nuclear medicine and he also said he called the equipment manufacturer.
So, my options were to give up on the project altogether, or to do it all over again. Now, it's not some horrendous painful thing, but it's not exactly Sunday brunch either. Here's what it involves:
First, a pregnancy test to make sure they don't nuclearize some poor fetus
Wait 1 hour for pregnancy test results
Get injection of a scary-looking nuclear medicine (It is kept in a cement vial-so not kidding)
Wait about 2 hours for medicine to make it's way around your insides
Get into CT scan machine.
Lie on back with arms over head for LONG periods of time
I don't typically lie on my back with my arms up over my head for long periods and on Tuesday I got to the point where my arms felt like they were falling asleep and I was DYING to move them.
So, while this is not the worst experience in the world, it's also not one I was anxious to repeat. Especially for no bloody good reason. And no, software malfunction is not a good reason! (And you also have to ask yourself if software malfunction is code for, "someone f-ed up")
But I will do it again for the sake of research. Someone else probably did something similar for my benefit in the past, right?
Still I am beginning to think that the luck fairy is not so happy with me. But I feel superstitious even saying that. Sorry luck fairy! I like you!
Thursday, November 19, 2009
The name
For the first time in a while, I don't feel terribly inspired today, so I will explain the name of this blog.
My almost-2-year-old likes those plastic buckles. I mean she REALLY likes buckling things. Luckily, she hasn't mastered unbuckling yet, which is a blessing.
So, if we are putting her in her carseat, for instance, she will often insist on taking over the buckling responsibilities by saying "MY buckleup!". I'm usually happy to let her.
She likes it so much in fact that D got a short strap and two buckles at REI for her to go to town with. It's a good toy, it probably set us back .52 tops.
When I was trying to think of a unique name for this blog, that one just came to me and, lo and behold, it wasn't taken.
Some have suggested that you could attribute a deeper meaning to that name related to my experience and while that's probably true, I don't think I have the energy to explore all those connections (i.e. I'm lazy). I think it would feel like trying to find the symbolism in my high school film class, at those times when I didn't know what the symbolism symbolized. I will be honest, I still have trouble with Chinatown.
So there you have it.
My almost-2-year-old likes those plastic buckles. I mean she REALLY likes buckling things. Luckily, she hasn't mastered unbuckling yet, which is a blessing.
So, if we are putting her in her carseat, for instance, she will often insist on taking over the buckling responsibilities by saying "MY buckleup!". I'm usually happy to let her.
She likes it so much in fact that D got a short strap and two buckles at REI for her to go to town with. It's a good toy, it probably set us back .52 tops.
When I was trying to think of a unique name for this blog, that one just came to me and, lo and behold, it wasn't taken.
Some have suggested that you could attribute a deeper meaning to that name related to my experience and while that's probably true, I don't think I have the energy to explore all those connections (i.e. I'm lazy). I think it would feel like trying to find the symbolism in my high school film class, at those times when I didn't know what the symbolism symbolized. I will be honest, I still have trouble with Chinatown.
So there you have it.
Wednesday, November 18, 2009
oldies but goodies
I had my first of two PET CT scans yesterday for the study I'm participating in. For you nerds who crave the detail, this is to look for hypoxia (wikipedia it.....OK, OK, it means low-levels of oxygen) in chordomas. My radiation oncologist's theory is that chordomas with low levels of oxygen might respond better to a higher level of radiation. So far, only about 5 people have participated in the study (I told you we chordoma-ites were special!) and I think hypoxia was only found in one. Either way, the results are not going to alter my course of treatment. It's purely in study phase right now.
At one point I changed waiting rooms and there was an older guy in there with his wife. he was probably late 70s or early 80s? To my surprise, he was waiting to pounce on me as soon as I got in there. "Where are YOU coming from?!" (I had a big suitcase, I came directly from a business trip) "You're too young to be in here!" (Didn't know how to respond to that one, so the best I could do was "Hey, what are you gonna do?") I got a couple of other questions I think I blocked from my memory, then I have to admit that I hastily tried to hide in my magazine. I know I should be more friendly, but frankly, he hit a nerve with the age comment.
Later, he came out of his scan and tried to argue me out of the fact that I was getting a PET-CT scan. Because I didn't drink barium like he had, he was convinced I was in there for something else. Annoyed again, I just tried a polite, "Well, I think it's just a different type of test.", but he wasn't having that. So I guess he is an expert radiologist now, because he drank some barium.
I know I'm disrespecting my elders and I know he was just trying to be friendly and, yes, I know I'm being a royal bee-otch, but this guy just really annoyed me.
So there. That's off my chest.
While we're talking on the subject of the AARP generation, C has officially learned how to embarass us! We were in a clothes store in NYC and there was an older woman looking at the racks and C pointed and said "Old Lady", "Old Lady". I'm not sure if the woman heard, but D just said "Yeah....Nice Lady." and barreled C and her stroller out of there.
I will save this story for her for when she's incredibly embarassed of us in middle school and high school.
At one point I changed waiting rooms and there was an older guy in there with his wife. he was probably late 70s or early 80s? To my surprise, he was waiting to pounce on me as soon as I got in there. "Where are YOU coming from?!" (I had a big suitcase, I came directly from a business trip) "You're too young to be in here!" (Didn't know how to respond to that one, so the best I could do was "Hey, what are you gonna do?") I got a couple of other questions I think I blocked from my memory, then I have to admit that I hastily tried to hide in my magazine. I know I should be more friendly, but frankly, he hit a nerve with the age comment.
Later, he came out of his scan and tried to argue me out of the fact that I was getting a PET-CT scan. Because I didn't drink barium like he had, he was convinced I was in there for something else. Annoyed again, I just tried a polite, "Well, I think it's just a different type of test.", but he wasn't having that. So I guess he is an expert radiologist now, because he drank some barium.
I know I'm disrespecting my elders and I know he was just trying to be friendly and, yes, I know I'm being a royal bee-otch, but this guy just really annoyed me.
So there. That's off my chest.
While we're talking on the subject of the AARP generation, C has officially learned how to embarass us! We were in a clothes store in NYC and there was an older woman looking at the racks and C pointed and said "Old Lady", "Old Lady". I'm not sure if the woman heard, but D just said "Yeah....Nice Lady." and barreled C and her stroller out of there.
I will save this story for her for when she's incredibly embarassed of us in middle school and high school.
Tuesday, November 17, 2009
Doomsday
So I went to the New York Academy of Sciences gala last night. One of the scientists who was honored spoke about how there is so much pressure in science now to focus on translational research. In other words, to focus on scientific research that will have direct implications on drug discovery and health care, etc. Yet his point was that, if some of the more fundamental research is ignored, it's a huge loss, even, ultimately, for medical research. At an otherwise, um, rather dull event, this scientist was using this venue to make his point. Pretty passionately I might add.
Jeffrey Sachs also spoke last night about how we are really at the tipping point of catastrophe as far as climate change is concerned and while the climate change bill is hiding behind other "more important" bills in Congress, we are quickly losing time to do anything before it's too late.
This is actually something I've been thinking about lately. The climate change problem, though I am not as well-schooled in it as I should be, competely freaks me out. Part of the reason I don't want to delve too deeply into it is that I'm afraid to know.
And I've thought of how this relates to me and to my disease and to disease in general. Because, I will admit that I've been guilty of thinking: "Why are we worrying about curing diseases, or, for that matter, fixing health care, if the entire planet is doomed?" "Why aren't we aggressively trying to fix THAT problem before all others? Immediately?" And I don't know the answer to that.
I'm sure I'm not the only person to think this. And believe me, I do know why we want to find cures for disease. I feel those reasons more intimately than I ever did before. I want a cure for chordoma and pancreatic cancer and breast cancer and lung cancer and AIDS and leukemia and everything I've ever seen affect someone I know.
I do feel that this bigger picture stuff is being ignored because it's not directly hurting people yet in an obvious way. And by the time it does it will be too late.
I don't think my reuseable grocery bag is going to do much to help in the meantime. So I guess I just have to worry about both long-term and short-term. In the short and long-term.
Jeffrey Sachs also spoke last night about how we are really at the tipping point of catastrophe as far as climate change is concerned and while the climate change bill is hiding behind other "more important" bills in Congress, we are quickly losing time to do anything before it's too late.
This is actually something I've been thinking about lately. The climate change problem, though I am not as well-schooled in it as I should be, competely freaks me out. Part of the reason I don't want to delve too deeply into it is that I'm afraid to know.
And I've thought of how this relates to me and to my disease and to disease in general. Because, I will admit that I've been guilty of thinking: "Why are we worrying about curing diseases, or, for that matter, fixing health care, if the entire planet is doomed?" "Why aren't we aggressively trying to fix THAT problem before all others? Immediately?" And I don't know the answer to that.
I'm sure I'm not the only person to think this. And believe me, I do know why we want to find cures for disease. I feel those reasons more intimately than I ever did before. I want a cure for chordoma and pancreatic cancer and breast cancer and lung cancer and AIDS and leukemia and everything I've ever seen affect someone I know.
I do feel that this bigger picture stuff is being ignored because it's not directly hurting people yet in an obvious way. And by the time it does it will be too late.
I don't think my reuseable grocery bag is going to do much to help in the meantime. So I guess I just have to worry about both long-term and short-term. In the short and long-term.
Whoopsy!
I totally forgot to blog last night. Sorry. I'm sure it was a monumental disappointment for you!
It's weird. I did get back to my hotel late (11!) But I could have squeezed something in if I'd thought of it. I just totally didn't think of it. Oh well.
The good news: I'll do two posts today to make up for this.
The bad news: This counts as one.
It's weird. I did get back to my hotel late (11!) But I could have squeezed something in if I'd thought of it. I just totally didn't think of it. Oh well.
The good news: I'll do two posts today to make up for this.
The bad news: This counts as one.
Sunday, November 15, 2009
Oh please
So, I woke up in New York this morning barely able to move my shoulder. C'mon. Really?
My powers of deduction told me that it was from lifting (with D) C in her stroller up and down the subway stairs. A lot of times it's just easier than finding an elevator (if there is one) and even if you do find an elevator, you have to be able to hold your breath through the rancid urine smell of the elevators (sorry). The smell of stale urine alone could keep me from living in New York. It's rough.
After some Tylenol and moving it around throughout the day the shoulder felt better. I did think this morning though, "Did I really screw this up? Am I going to need to have a flipping shoulder surgery or something now?" I am hoping that by tomorrow it will feel mostly all better, but sometimes a night's sleep is what makes things feel worse.
Sometimes I think it's really not fair to have any additional hassles right now. I feel like I'm owed some really good luck or something. Then I have to remind myself that my condition is in a lot better place than some other peoples', so I AM the lucky one. Everything is relative I guess.
Shoulder aside, we had a good day. Maybe I'll manage to get some pictures up, but not tonight.
My powers of deduction told me that it was from lifting (with D) C in her stroller up and down the subway stairs. A lot of times it's just easier than finding an elevator (if there is one) and even if you do find an elevator, you have to be able to hold your breath through the rancid urine smell of the elevators (sorry). The smell of stale urine alone could keep me from living in New York. It's rough.
After some Tylenol and moving it around throughout the day the shoulder felt better. I did think this morning though, "Did I really screw this up? Am I going to need to have a flipping shoulder surgery or something now?" I am hoping that by tomorrow it will feel mostly all better, but sometimes a night's sleep is what makes things feel worse.
Sometimes I think it's really not fair to have any additional hassles right now. I feel like I'm owed some really good luck or something. Then I have to remind myself that my condition is in a lot better place than some other peoples', so I AM the lucky one. Everything is relative I guess.
Shoulder aside, we had a good day. Maybe I'll manage to get some pictures up, but not tonight.
Saturday, November 14, 2009
I'm easy to impress
Wow. My first remote post from my laptop! I can't believe I managed to do this and was not too lazy. Actually, it was pretty easy.
We made it to New York unscathed. C loved the choo-choos. She still doesn't know there is a choo-choo distinction between a real train and the subway. So that's good.
After we checked in, we just wandered around Times Square for the overstimulation factor. Even on a rainy day it's a mad scene. We went into the Toys R Us (sorry, I don't seem to have a backwards "R" on my keyboard, strange that) in Times Square with the operational ferris wheel. We were sort of regretting that as soon as we got in there. It was scary-busy and if you are the type who avoids malls at the holidays, you might have had a panic attack. We retreated quickly.
Before that I had stopped to get a tea on our way over and this place had a whole convaluted way of making it where they set this whole mixed up brew on top of a container and set a timer. When the times up, they press a button to filter the whole thing and then the guy pours it into your cup. It was so theatrical, but I have to admit that I was impressed. I love this about New York. Even your average place on the corner has to have a gimmick to compete.
We had a really nice dinner at this place in Hell's Kitchen. There was a baby at the table next to us and C enjoyed flirting with him during the dinner. She even ate some stuff.
It's been a nice day and a nice escape. Back with more tomorrow.
We made it to New York unscathed. C loved the choo-choos. She still doesn't know there is a choo-choo distinction between a real train and the subway. So that's good.
After we checked in, we just wandered around Times Square for the overstimulation factor. Even on a rainy day it's a mad scene. We went into the Toys R Us (sorry, I don't seem to have a backwards "R" on my keyboard, strange that) in Times Square with the operational ferris wheel. We were sort of regretting that as soon as we got in there. It was scary-busy and if you are the type who avoids malls at the holidays, you might have had a panic attack. We retreated quickly.
Before that I had stopped to get a tea on our way over and this place had a whole convaluted way of making it where they set this whole mixed up brew on top of a container and set a timer. When the times up, they press a button to filter the whole thing and then the guy pours it into your cup. It was so theatrical, but I have to admit that I was impressed. I love this about New York. Even your average place on the corner has to have a gimmick to compete.
We had a really nice dinner at this place in Hell's Kitchen. There was a baby at the table next to us and C enjoyed flirting with him during the dinner. She even ate some stuff.
It's been a nice day and a nice escape. Back with more tomorrow.
Friday, November 13, 2009
Phase 2 Part Deux
....So anyway, let me tell you how I finished off my visit yesterday....
After I was done with my CT scan and tattooage, we decided to walk over to the Proton Therapy center so I could orient myself a bit before I start treatment.
Can I just say first that when you go outside where the entrance to the main hospital is, surrounded by other buildings, it is utter chaos. There is tons of traffic, and construction and detours and people coming and going, and it's just high blood pressure inducing. It seems more heart-attack inducing than relieving.
When we went into the PT center and went up to the waiting room, it was an oasis. It's cheerful. There's a TV, a computer....I think one woman was making jewelry. It was nice. There is a really nice kids area with toys and books and lots of good kid stuff. That was kind of hard to see, but I think that's a whole other post. There were no kids about when we peeked in.
It's not lost on me how lucky I am to be so close to this place, and with insurance that will pay for the treatment. I'm not only getting some of the best treatment in the world, but they are trying to make me comfortable while providing it. It doesn't get much luckier than that. (People should know though that MGH has special grants for people with chordoma from out of town to help pay for lodging and expenses).
Don't worry, I'm not trying to be all Pollyanna here. I know it's not a week in Hawaii, but it's probably as good as it gets for this stuff, I think
Anyway, that about sums up my visit. We are off to NYC tomorrow for the weekend. C is excited about taking a choo choo train. Even a subway is a choo choo for her. It doesn't take much for kids. I loved that she was just thrilled with merely handing out candy on Halloween and seeing "big kids". She would stand on the steps holding some candy in her hand and shout, "Big Kids.....CANDY!" to try to lure them over.
Never fear, I have a laptop. I'll be reporting remotely from New York City and environs. Til then.
After I was done with my CT scan and tattooage, we decided to walk over to the Proton Therapy center so I could orient myself a bit before I start treatment.
Can I just say first that when you go outside where the entrance to the main hospital is, surrounded by other buildings, it is utter chaos. There is tons of traffic, and construction and detours and people coming and going, and it's just high blood pressure inducing. It seems more heart-attack inducing than relieving.
When we went into the PT center and went up to the waiting room, it was an oasis. It's cheerful. There's a TV, a computer....I think one woman was making jewelry. It was nice. There is a really nice kids area with toys and books and lots of good kid stuff. That was kind of hard to see, but I think that's a whole other post. There were no kids about when we peeked in.
It's not lost on me how lucky I am to be so close to this place, and with insurance that will pay for the treatment. I'm not only getting some of the best treatment in the world, but they are trying to make me comfortable while providing it. It doesn't get much luckier than that. (People should know though that MGH has special grants for people with chordoma from out of town to help pay for lodging and expenses).
Don't worry, I'm not trying to be all Pollyanna here. I know it's not a week in Hawaii, but it's probably as good as it gets for this stuff, I think
Anyway, that about sums up my visit. We are off to NYC tomorrow for the weekend. C is excited about taking a choo choo train. Even a subway is a choo choo for her. It doesn't take much for kids. I loved that she was just thrilled with merely handing out candy on Halloween and seeing "big kids". She would stand on the steps holding some candy in her hand and shout, "Big Kids.....CANDY!" to try to lure them over.
Never fear, I have a laptop. I'll be reporting remotely from New York City and environs. Til then.
Thursday, November 12, 2009
Phase 2 Begins
Welp, phase 2 has begun.
I went to MGH for my prep for radiation. I didn't go to the proton therapy center. It was the main radiation oncology center. I won't be receiving my treatment there, but most of the people there were getting treatment for all different types of cancer I imagine.
It was a dose of reality for sure. Some people were very happily chatting. Many seemed to know each other, so I imagine a lot of people are scheduled at around the same time and have gotten to know each other in the waiting room. That was kind of nice. One guy, who was in his late twenties probably, was having his last treatment today. His mom (I presume) was telling everyone and was obviously very happy, proud, relieved, you-name-it. I couldn't help but feel a little happy, proud, relieved for him too.
There were some people there though that looked, well, sick. There was a guy in a wheelchair (40s maybe) and his relative pulled out a pouch and dispensed about 7 or 8 different medications from pill bottles and passed them to him.
Another woman, probably a couple of years younger than me, was wheeled out of some room and sat in the waiting area looking incredibly fatigued. Her clothes and hair looked like she had a much sassier personality than she had the energy to muster.
A nurse came out for me with the two dreaded bottles of barium in hand. Suh-weet. I opted for the straw over the cup and, actually, it wasn't as bad this time. It was grape flavored, but at least they didn't make it purple and pretend it was grape soda. When I told D it was better than the "banana smoothie" variety, he remarked that "everything here is better." in reference to our recent experiences at BI.
Then we went to talk to the radiation oncologist who went over every possible thing that can go wrongm but is highly unlikely to, and then he handed me a pen.
After that I had my setup catscan (I know "setup" is not the official name for this, but the real name escapes me, sorry!) I had to strip from the waste down (with one of those flimsy robes) and they basically poked and pushed me around on the table until they felt they had the right position.
Then I got my "tattoo"! They took little needles (like a sewing needle I imagine) and made four little dots on my stomach and sides with (permanent?) ink, so they'll know how to line me up on the equipment when I start.
It was all a bit odd. Not least of which was some of the small talk these guys make to put me at ease before they see me half naked and stick needles in my stomach. ("Do you feel like you've been here forever?" "What an interesting watch!" "Where do you live?") I do appreciate the effort though. It's better than wondering what they're thinking.
....I'm feeling like this post is a bit long. I'm going to pick up with the rest tomorrow. Ciao.
I went to MGH for my prep for radiation. I didn't go to the proton therapy center. It was the main radiation oncology center. I won't be receiving my treatment there, but most of the people there were getting treatment for all different types of cancer I imagine.
It was a dose of reality for sure. Some people were very happily chatting. Many seemed to know each other, so I imagine a lot of people are scheduled at around the same time and have gotten to know each other in the waiting room. That was kind of nice. One guy, who was in his late twenties probably, was having his last treatment today. His mom (I presume) was telling everyone and was obviously very happy, proud, relieved, you-name-it. I couldn't help but feel a little happy, proud, relieved for him too.
There were some people there though that looked, well, sick. There was a guy in a wheelchair (40s maybe) and his relative pulled out a pouch and dispensed about 7 or 8 different medications from pill bottles and passed them to him.
Another woman, probably a couple of years younger than me, was wheeled out of some room and sat in the waiting area looking incredibly fatigued. Her clothes and hair looked like she had a much sassier personality than she had the energy to muster.
A nurse came out for me with the two dreaded bottles of barium in hand. Suh-weet. I opted for the straw over the cup and, actually, it wasn't as bad this time. It was grape flavored, but at least they didn't make it purple and pretend it was grape soda. When I told D it was better than the "banana smoothie" variety, he remarked that "everything here is better." in reference to our recent experiences at BI.
Then we went to talk to the radiation oncologist who went over every possible thing that can go wrongm but is highly unlikely to, and then he handed me a pen.
After that I had my setup catscan (I know "setup" is not the official name for this, but the real name escapes me, sorry!) I had to strip from the waste down (with one of those flimsy robes) and they basically poked and pushed me around on the table until they felt they had the right position.
Then I got my "tattoo"! They took little needles (like a sewing needle I imagine) and made four little dots on my stomach and sides with (permanent?) ink, so they'll know how to line me up on the equipment when I start.
It was all a bit odd. Not least of which was some of the small talk these guys make to put me at ease before they see me half naked and stick needles in my stomach. ("Do you feel like you've been here forever?" "What an interesting watch!" "Where do you live?") I do appreciate the effort though. It's better than wondering what they're thinking.
....I'm feeling like this post is a bit long. I'm going to pick up with the rest tomorrow. Ciao.
Wednesday, November 11, 2009
Shakeup
There was a big shakeup at work today. A reorganization with the specifics not specified. Details to come.
A lot of people were blindsided and are wondering what their futures are.
In a strange way there are some good things about these moments sometimes. They're opportunities for people to come together, vent their common frustrations or fears, and bond. I've experienced these moments before and they can even be liberating sometimes. When there's a possibility you might be relieved of some of your present responsibilities and faced with new ones, it can be kind of exciting.
I don't think I'll be significantly impacted by this (except maybe personally, depending on how it affects some of my friends at work). But still, I found myself talking with friends at the end of the day about my frustrations with my present position and my career. I honestly haven't thought or even been frustrated by that since the summer. Since before all this.
Lately, I feel like I've just been pushing some buttons to make work happen as best I can, but didn't have the time or enery to be frustrated by it or to even glimpse at the bigger picture of my career. Which has been good. So I even surprised myself by venting that frustration tonight.
I think I have to go back to thinking about where I want to be when I'm done with all this. And let go of my frustration about my present situation.
A coworker, who will probably be seriously affected by this shakeup, said today "It's just a job." I really do like when people say that.
A lot of people were blindsided and are wondering what their futures are.
In a strange way there are some good things about these moments sometimes. They're opportunities for people to come together, vent their common frustrations or fears, and bond. I've experienced these moments before and they can even be liberating sometimes. When there's a possibility you might be relieved of some of your present responsibilities and faced with new ones, it can be kind of exciting.
I don't think I'll be significantly impacted by this (except maybe personally, depending on how it affects some of my friends at work). But still, I found myself talking with friends at the end of the day about my frustrations with my present position and my career. I honestly haven't thought or even been frustrated by that since the summer. Since before all this.
Lately, I feel like I've just been pushing some buttons to make work happen as best I can, but didn't have the time or enery to be frustrated by it or to even glimpse at the bigger picture of my career. Which has been good. So I even surprised myself by venting that frustration tonight.
I think I have to go back to thinking about where I want to be when I'm done with all this. And let go of my frustration about my present situation.
A coworker, who will probably be seriously affected by this shakeup, said today "It's just a job." I really do like when people say that.
Tuesday, November 10, 2009
Sheryl Crow therapy
D told me about this book he saw that Sheryl Crow wrote about having cancer and it sounded kinda frivolous. Nothing wrong with that, as everyone takes this stuff pretty seriously 99% of the time. But I guess there is some chapter in the book about going shopping to make yourself feel better.
I think I might be doing that a little bit. Or at least it seems like a side effect of all this has been that I feel pretty justified in buying myself stuff. For reference, see eyeglass shopping post.
Don't get me wrong. I haven't gone crazy and bought those leather leggings that are so of-the-moment but so not a sustainable fashion choice. For anyone. But I have been seizing some opportunities to shop.
I feel kind of OK about this. I think there is definitely a lot to be said about feeling more in control of your life when you look a little more put-together. After I had C and none of my clothes fit for months (OK, years) I felt so frumpy and dishevelled and like I was presenting this image that I could not manage to dress myself properly while caring for a baby. Which was mostly true.
But I've felt better lately when I've had something to wear. Something that fits. And I'm even accessorizing more often! So I guess I'm embracing this retail therapy bullsh*t.
I think I might be doing that a little bit. Or at least it seems like a side effect of all this has been that I feel pretty justified in buying myself stuff. For reference, see eyeglass shopping post.
Don't get me wrong. I haven't gone crazy and bought those leather leggings that are so of-the-moment but so not a sustainable fashion choice. For anyone. But I have been seizing some opportunities to shop.
I feel kind of OK about this. I think there is definitely a lot to be said about feeling more in control of your life when you look a little more put-together. After I had C and none of my clothes fit for months (OK, years) I felt so frumpy and dishevelled and like I was presenting this image that I could not manage to dress myself properly while caring for a baby. Which was mostly true.
But I've felt better lately when I've had something to wear. Something that fits. And I'm even accessorizing more often! So I guess I'm embracing this retail therapy bullsh*t.
Monday, November 9, 2009
Someone saved my life
I don't think you all know how I found out about the chordoma, but for those who do know, sorry for the repetition.
When I was pregnant with C, they did their usual ultrasounds and found a cyst on my ovary. The short of it is that it was totally benign. I ended up having minor surgery for it, but they didn't even remove it. No biggie.
Anyway, in that process I had an MRI. And this growth on my tailbone showed up. At the time, I had an infant, was about to have this other surgery, and was about to go back to work after my maternity leave. So I waited to follow this thing up. Not a smart move in hindsight, but luckily for me, this did not really adversely affect my prognosis 18 months later, when I did follow up. Nevertheless, lesson learned. I will follow any and everything up. And I hope you will do the same.
My point is that, if I hadn't gotten pregnant with C, this whole chain of events would never have been set in motion and I wouldn't be starting my treatments now. Things could have gotten bad before I found out.
So maybe she saved my life.
While I *felt* ready to get pregnant when I did, I wasn't quite ready. But who is, right? One Thursday night I was drinking a stiff caipirinha and the next morning I was faced with the reality that I really shouldn't have coffee, and I was due to go out for drinks with a big group of friends that night so how do I manage that? Oh, and social smoking was finito as well.
Nevertheless, I had a good pregnancy and an amazing delivery and then this little person came home with us. Whoah, we weren't ready for that either! She cried. A LOT. I spent a month struggling to breastfeed her but she wasn't having it. Then I felt guilty and inadequate when I gave up because all the other mommies were. VERY often she would vomit the ENTIRE contents of a bottle on me. (No, not spit up. I'm not exaggerating when I say VOMIT. WHOLE. BOTTLE.). I went to mothers' groups where all the mothers said their babies were "pretty mellow" and C would be screaming in the background.
I think I spent 9+ months preparing for pregnancy and delivery but not for what comes after. Another lesson learned.
Still, let's face it, I loved this kid. Around 2.5 months we took her to the Berkshires for the weekend and she was an angel. At around 4 months she was getting to be smiley and playful. At around 6 months I came home from a business trip and she was starting to sit up and move around and just amaze me. And she continues to do so every day.
Don't get me wrong. Now she's a toddler. I get frustrated that she doesn't want to eat anything but cookies and raviolis. And she's not immune to a good tantrum now and then.
But she is delightful. I'm so incredibly grateful she came along no matter what, but I can't help thinking that maybe she came for a reason. I don't know. But that amazes me too.
Sunday, November 8, 2009
The checkbox
I went to get new glasses yesterday. Overall it was pretty fun. I guess it's the best possible medical appointment one can have because it involves shopping in the end.
I was eligible for free lenses and a $150 credit towards frames through my vision insurance. I didn't expect to end up walking out of there $200 poorer, but it happened. Mind you, I did pick the cheapest pair among my favorites (though the salesman annoyingly kept pulling out more pairs as I was trying to narrow it down. And was it a coincidence that he pulled the outrageously expensive pairs out? I think not.) Still, I guess what I ended up with can't quite be called "inexpensive". I feel like I need a countdown clock that ticks down the hours til I lose them. I hope I get a year in at least?
The weird thing was filling out the form before my exam and having to check the "cancer" box under the medical conditions section. I've never had to check any of those boxes. Ever! Those boxes used to freak me out because they'd have things like, "metal implant in brain", "glass eye", "embarassing venereal disease"*. None of those boxes ever, ever felt like they'd apply to me.
I've had sporadic asthma in my life, but I don't usually admit to it on those forms. And in some ways I feel like a cancer fraud because I don't have any cancer symptoms. This still seems very unreal to me because I've been such a "healthy" person my whole life. I've only stayed overnight in a hospital for pregnancy or childbirth-related reasons.
But I guess I shouldn't worry about the fraud part because who would bother to lie on those forms? Except maybe some crazies.
This is also a piece of information that seems unrelated to my reading glasses. Now that I have this blog though, I guess everyone is entitled to know. Maybe I need to call the dentist.
*Can't wait to see what those damn Google ads do with that one.
I was eligible for free lenses and a $150 credit towards frames through my vision insurance. I didn't expect to end up walking out of there $200 poorer, but it happened. Mind you, I did pick the cheapest pair among my favorites (though the salesman annoyingly kept pulling out more pairs as I was trying to narrow it down. And was it a coincidence that he pulled the outrageously expensive pairs out? I think not.) Still, I guess what I ended up with can't quite be called "inexpensive". I feel like I need a countdown clock that ticks down the hours til I lose them. I hope I get a year in at least?
The weird thing was filling out the form before my exam and having to check the "cancer" box under the medical conditions section. I've never had to check any of those boxes. Ever! Those boxes used to freak me out because they'd have things like, "metal implant in brain", "glass eye", "embarassing venereal disease"*. None of those boxes ever, ever felt like they'd apply to me.
I've had sporadic asthma in my life, but I don't usually admit to it on those forms. And in some ways I feel like a cancer fraud because I don't have any cancer symptoms. This still seems very unreal to me because I've been such a "healthy" person my whole life. I've only stayed overnight in a hospital for pregnancy or childbirth-related reasons.
But I guess I shouldn't worry about the fraud part because who would bother to lie on those forms? Except maybe some crazies.
This is also a piece of information that seems unrelated to my reading glasses. Now that I have this blog though, I guess everyone is entitled to know. Maybe I need to call the dentist.
*Can't wait to see what those damn Google ads do with that one.
Saturday, November 7, 2009
Pout-snarl
Well, we got our pictures back from the photo session. Overall, I was pleasantly surprised. Considering that C was in a very poor mood and was determined to run away from the camera at all costs, the pictures turned out much better than I expected.
This is one of my favorites though. This is her "I'm annoyed at you." pout-snarl. She's not downright pissed when she does this, she just isn't getting her way and she wants you to know.
I wish we could get away with this expression as adults.
Friday, November 6, 2009
The Plan
Whew. It's been kind of a crazy week, all-told.
Fertility surgery was yesterday. Got the results today. The end result is not quite as bountiful as I'd hoped. It's better than nothing for sure. But, still, there's no reality show full of kids in the works for me (that's actually an upside). It does plant a little seed in my head though. What if I don't have another child?
That's not what I had planned, but, then again, nothing has gone quite as planned this fall. So I guess I have to go back to rolling the dice and seeing what happens.
I'm not much of a life planner to begin with, so maybe I can cope with all the upheavals of this fall better than some. The lack of life planning is actually something I've considered somewhat of a downfall of mine. Sometimes I wish that I was better about setting goals for myself or making life changes more frequently. I've always kind of regretted that I've let myself become too settled at times, waiting for things to change around me.
Well, this disease has sure as hell shaken things up!
I did think it would be nice if got pregnant when C was about 2.5. I was actually planning it based, in part, on the seasons. I thought it probably wouldn't be prudent to have a baby in the middle of the summer, when I would be cooped up indoors too much while it was nice out. Early spring seemed perfect. That thought seems kind of ridiculous to me now.
The baby plan is off the table at the moment. But that's OK. Maybe things will all work out according to some other plan and it might not even be about me. It might be about defining C's life in a particular way.
It's funny how some peoples' lives DO live up exactly to their plans. My aunt once showed me a paper my cousin had written in high school about where she would be in 10 years and, sure enough, she'd accomplished all the goals she'd laid out at age 15 by the time she was 25. That was both kind of spooky and fascinating to me. I knew right then that I wasn't like my cousin.
I'm not sure what to plan right now. A big life change for when this is all done? Maybe. Or maybe this is not a time to plan but to just sit tight and make sure everything is all right first.
I guess I will just try to "be present" as the yogis like to say. Still can't do crow to save my life though.
P.S. Thanks to all of you who have told me you've been reading and enjoying this blog. It means a lot. Don't hesitate to become a follower on here, or to leave a comment. I promise not to bite!
Fertility surgery was yesterday. Got the results today. The end result is not quite as bountiful as I'd hoped. It's better than nothing for sure. But, still, there's no reality show full of kids in the works for me (that's actually an upside). It does plant a little seed in my head though. What if I don't have another child?
That's not what I had planned, but, then again, nothing has gone quite as planned this fall. So I guess I have to go back to rolling the dice and seeing what happens.
I'm not much of a life planner to begin with, so maybe I can cope with all the upheavals of this fall better than some. The lack of life planning is actually something I've considered somewhat of a downfall of mine. Sometimes I wish that I was better about setting goals for myself or making life changes more frequently. I've always kind of regretted that I've let myself become too settled at times, waiting for things to change around me.
Well, this disease has sure as hell shaken things up!
I did think it would be nice if got pregnant when C was about 2.5. I was actually planning it based, in part, on the seasons. I thought it probably wouldn't be prudent to have a baby in the middle of the summer, when I would be cooped up indoors too much while it was nice out. Early spring seemed perfect. That thought seems kind of ridiculous to me now.
The baby plan is off the table at the moment. But that's OK. Maybe things will all work out according to some other plan and it might not even be about me. It might be about defining C's life in a particular way.
It's funny how some peoples' lives DO live up exactly to their plans. My aunt once showed me a paper my cousin had written in high school about where she would be in 10 years and, sure enough, she'd accomplished all the goals she'd laid out at age 15 by the time she was 25. That was both kind of spooky and fascinating to me. I knew right then that I wasn't like my cousin.
I'm not sure what to plan right now. A big life change for when this is all done? Maybe. Or maybe this is not a time to plan but to just sit tight and make sure everything is all right first.
I guess I will just try to "be present" as the yogis like to say. Still can't do crow to save my life though.
P.S. Thanks to all of you who have told me you've been reading and enjoying this blog. It means a lot. Don't hesitate to become a follower on here, or to leave a comment. I promise not to bite!
Thursday, November 5, 2009
Phase 1=Done
Well, the fertility preservation procedure was a success. The doctor got 21 eggs, which he was quite happy with. At home today, when the Percoset abated, it kinda felt like my insides had been excavated like Mayan ruins. I'm hoping a good "sleep on it" will make tomorrow significantly easier.
I also feel like I got a sneak preview at life with my toddler after my *big* surgery to come. We told C that mommy had a "big booboo" on her tummy, so she has to be gentle. I think that was a little too hard for her to retain (understandably) b/c I did get climbed on regularly and at one point I got a pretty good press-down on the tummy, which didn't feel especially good.
I am still pretty worried about how I can just suspend taking care of her for however many weeks after my surgery. And how that will break my heart in a big way. That is one of the things that bothered me the most when I first heard my diagnosis. Particularly because she has been in this phase of having her rotating favorites. These people (either D, me or my mom) are randomly selected to carry out whatever tasks she assigns and no one else is allowed to help (yes, I admit, we adults are often the serfs on our own land!) I worry that when I can't do much of anything, I will be shut out. I hope she will be over this phase by then.
C and I did have a nice lying-down snuggle on the couch tonight and it was totally even worth enduring Barney for. I hope that is more of the way things will be after the surgery, but my girl is not much of one for lying down. Or even sitting, for that manner. Suspended by one toe from a 10 ft. platform over a pit of open flames and alligators is more her style.
Speaking of alligators, I also discovered by watching Barney that that is where she learned the term "Alligator Pie". It's not even a song, some kid just mentions that term once on the show. She definitely has some kind of an alligator obsession brewing because "Alligators All Around" is the ONLY song she wants to hear on my Ipod. The first few weeks of having it on repeat were surprisingly tolerable, but now I can't take it anymore. Must find something else to hook her on.
I also feel like I got a sneak preview at life with my toddler after my *big* surgery to come. We told C that mommy had a "big booboo" on her tummy, so she has to be gentle. I think that was a little too hard for her to retain (understandably) b/c I did get climbed on regularly and at one point I got a pretty good press-down on the tummy, which didn't feel especially good.
I am still pretty worried about how I can just suspend taking care of her for however many weeks after my surgery. And how that will break my heart in a big way. That is one of the things that bothered me the most when I first heard my diagnosis. Particularly because she has been in this phase of having her rotating favorites. These people (either D, me or my mom) are randomly selected to carry out whatever tasks she assigns and no one else is allowed to help (yes, I admit, we adults are often the serfs on our own land!) I worry that when I can't do much of anything, I will be shut out. I hope she will be over this phase by then.
C and I did have a nice lying-down snuggle on the couch tonight and it was totally even worth enduring Barney for. I hope that is more of the way things will be after the surgery, but my girl is not much of one for lying down. Or even sitting, for that manner. Suspended by one toe from a 10 ft. platform over a pit of open flames and alligators is more her style.
Speaking of alligators, I also discovered by watching Barney that that is where she learned the term "Alligator Pie". It's not even a song, some kid just mentions that term once on the show. She definitely has some kind of an alligator obsession brewing because "Alligators All Around" is the ONLY song she wants to hear on my Ipod. The first few weeks of having it on repeat were surprisingly tolerable, but now I can't take it anymore. Must find something else to hook her on.
Wednesday, November 4, 2009
Lucky you!
I just discovered that this month is Nablopomo. I am willing to take on this challenge and post an entry every day this month! I don't promise they'll all be insightful or even readable posts, but I do promise that they will all be from me, created with love (as Carla from Top Chef used to say).
I am still working out some of the logistics (getting that laptop set up sooner rather than later, for instance). But, I do have some blogposts swirling around in my head now that I'm just gonna let loose. I think I need to provide some background on the how I found out about my diagnosis, etc.. For those of you who already know some of that detail, apologies in advance.
And I will probably have some non-fertility, non-chordoma, goodies too. Maybe even some photos!
I also know that I skipped November 2nd so I will post twice in one day sometime. That can be the magic bonus day.
For tonight though, no long blogposts, no fertility shots, yes going out for Mexican, probably skipping C's bath, and maybe watching last night's episode of The City.
Tomorrow is my big "retrieval day".
Hasta maniana
I am still working out some of the logistics (getting that laptop set up sooner rather than later, for instance). But, I do have some blogposts swirling around in my head now that I'm just gonna let loose. I think I need to provide some background on the how I found out about my diagnosis, etc.. For those of you who already know some of that detail, apologies in advance.
And I will probably have some non-fertility, non-chordoma, goodies too. Maybe even some photos!
I also know that I skipped November 2nd so I will post twice in one day sometime. That can be the magic bonus day.
For tonight though, no long blogposts, no fertility shots, yes going out for Mexican, probably skipping C's bath, and maybe watching last night's episode of The City.
Tomorrow is my big "retrieval day".
Hasta maniana
Tuesday, November 3, 2009
Noctomom
Today it felt luxurious to sleep in til 6:30. Really! No early morning bloodwork and ultrasound appt. for me. Aaaaahhhh.
Yesterday I had a 6:30 am appt. and I got there at about 6:25. There were 6-7 women standing outside waiting for the place to open up. Honestly, before that I wasn't sure the place ever closed.
So, we are standing outside and it's a little cold and you can see the staff inside but they haven't opened the doors yet. I felt like maybe we should start of chant of, "We Want Babies! We Want Babies!" That would have been funny I think.
There was actually some chit chat amongst the women standing outside, which was kind of refreshing. Every other time I've been there, everyone is just staring at each other in silence, looking kind of sullen.
I'd had the same ultrasound tech a few days before and she'd been pretty friendly and talkative. Not so much yesterday. The fertility Dr. said he is treating me as if this is my only chance, so he is treating me a lot less conservatively than he would a typical IVF patient. So, yesterday I had 21 of these "follicles" getting bigger. That made me wonder. Maybe the ultrasound tech doesn't have the context and she thinks I want to be Octomom?
For the record, I do not.
I do feel bloated, a little uncomfortable, and kind of pregnant (I know, I know, there's no "kind of" pregnant). And I am ready to be done with evening shots. D is ready too. He is the one giving them to me and it's tougher on him than on me I think.
Last shot is tonight. Go-day is Thursday. Wish us luck!
P.S. I'm sorry for that annoying ad in the middle of the blog. I was fooling around the other day and I've tried to get rid of it but I haven't been successful.
P.P.S. RC, if you are reading, you can send over the $30 fee.
Yesterday I had a 6:30 am appt. and I got there at about 6:25. There were 6-7 women standing outside waiting for the place to open up. Honestly, before that I wasn't sure the place ever closed.
So, we are standing outside and it's a little cold and you can see the staff inside but they haven't opened the doors yet. I felt like maybe we should start of chant of, "We Want Babies! We Want Babies!" That would have been funny I think.
There was actually some chit chat amongst the women standing outside, which was kind of refreshing. Every other time I've been there, everyone is just staring at each other in silence, looking kind of sullen.
I'd had the same ultrasound tech a few days before and she'd been pretty friendly and talkative. Not so much yesterday. The fertility Dr. said he is treating me as if this is my only chance, so he is treating me a lot less conservatively than he would a typical IVF patient. So, yesterday I had 21 of these "follicles" getting bigger. That made me wonder. Maybe the ultrasound tech doesn't have the context and she thinks I want to be Octomom?
For the record, I do not.
I do feel bloated, a little uncomfortable, and kind of pregnant (I know, I know, there's no "kind of" pregnant). And I am ready to be done with evening shots. D is ready too. He is the one giving them to me and it's tougher on him than on me I think.
Last shot is tonight. Go-day is Thursday. Wish us luck!
P.S. I'm sorry for that annoying ad in the middle of the blog. I was fooling around the other day and I've tried to get rid of it but I haven't been successful.
P.P.S. RC, if you are reading, you can send over the $30 fee.
Sunday, November 1, 2009
A tad envious
I've heard from some people on the Chordoma listserv, which has been great. It definitely feels really useful to hear from people in a similar position.
Since there are only two places in North America that offer the proton beam radiation treatment (Boston and Loma Linda, California), it seems like a lot of people come to Boston and it's an opportunity for some of them to sightsee and enjoy the city. I have to admit, I'm a tad envious that I'm not in that position. I'm going to be working during my first course of radiation.
Please don't get me wrong, I'm soooooo grateful that I live so near some of the best treatment facilities for this in the world. And the proximity means that I won't have to disrupt my family life too much and/or have to travel far, potentially by myself, for treatment. That's huge.
I guess it's the work thing that's tough. I've had a hard time focusing since my diagnosis. That's to be expected, right? But I worry about getting my focus back. It's been tough for me to feel like work is important this past month. And some work folks have told me that I should focus on my treatment and recovery. But at the same time, the work needs to get done. It doesn't go anywhere. The world can't stop moving b/c I have chordoma.
I also feel like maybe I am at a crossroads in my life. Maybe I need to make a major change and I needed this extra push to do that. I just haven't figured out what that major change is!
The climate at work has been a little bit difficult too. There have been cutbacks, which makes it hard to do the job, which leads to frustration and stress. So, logically, I think I'd rather be out exploring a new city and going to museums while I'm having my treatment than going to work. But I don't think that's gonna happen. I don't think I'll have time to experience many of the "perks" of this disease.
But that's OK. My daughter's routine won't change very much, hopefully. So that's what's most important. And maybe the major change will come to me.
Since there are only two places in North America that offer the proton beam radiation treatment (Boston and Loma Linda, California), it seems like a lot of people come to Boston and it's an opportunity for some of them to sightsee and enjoy the city. I have to admit, I'm a tad envious that I'm not in that position. I'm going to be working during my first course of radiation.
Please don't get me wrong, I'm soooooo grateful that I live so near some of the best treatment facilities for this in the world. And the proximity means that I won't have to disrupt my family life too much and/or have to travel far, potentially by myself, for treatment. That's huge.
I guess it's the work thing that's tough. I've had a hard time focusing since my diagnosis. That's to be expected, right? But I worry about getting my focus back. It's been tough for me to feel like work is important this past month. And some work folks have told me that I should focus on my treatment and recovery. But at the same time, the work needs to get done. It doesn't go anywhere. The world can't stop moving b/c I have chordoma.
I also feel like maybe I am at a crossroads in my life. Maybe I need to make a major change and I needed this extra push to do that. I just haven't figured out what that major change is!
The climate at work has been a little bit difficult too. There have been cutbacks, which makes it hard to do the job, which leads to frustration and stress. So, logically, I think I'd rather be out exploring a new city and going to museums while I'm having my treatment than going to work. But I don't think that's gonna happen. I don't think I'll have time to experience many of the "perks" of this disease.
But that's OK. My daughter's routine won't change very much, hopefully. So that's what's most important. And maybe the major change will come to me.
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