New Year's Eve. It hasn't dawned on me much that it's a new decade. And what are we really going to call the last decade? Are we truly going to call it "the aughts" or something? That just sounds ridiculous. And are we entering the teens? Lots of unswered questions here.
So radiation ends on Jan. 11th. This kicks off a few weeks of partying for me. Our house is going to be like that "Jersey Shore" house, except in New England and with a toddler.
No, not really.
But, I plan to try to live it up and relish sitting as much as possible before my surgery on February 3rd. I am practicing sitting with gusto right now in fact. I wish you could see me sitting here like a real pro.
I haven't thought much about the surgery but when I do sometimes, it freaks me out a bit. I may have already mentioned that I have never stayed overnight in a hospital for anything other than pregnancy or childbirth-related reasons, so this is a whole new ballgame for me. And I've never had a part of my spine removed either. So, lots of new tricks for this old dog.
I think I will fully vent my surgery fears later, closer to the actual time. For now I am going to hope that 2010 is ultimately better than 2009 and that I at least win the lottery sometime next year to make up for this cancer crap. I have a good feeling because my 2002 was awful but my 2003 was great, so I'm thinking of 2010 as being the rebound year. 2009 hasn't been a wholesale bad year, but still. 2010=rebound.
Happy Rebound Year to You!
Thursday, December 31, 2009
Thursday, December 24, 2009
Merry and weird
Welp, the last of a four day streak of no treatments. Oh, and I guess it was the holidays and all, too. There's something nice about not having to go to the hospital for that long a period of time. It was starting to get a little too routine.
I started collecting some things in my head that are just strike me as weird.
1. Sometimes I'll forget that I'm wearing a hospital bracelet many hours after I've left the hospital. I was so not the type to do that in the past. I hope no one has noticed.
2. When I enter the main entrance of the main hospital building, I wonder every time why there aren't people with limbs hanging off or other screaming emergencies. I can see the emergency wing right off to the side. In many ways the main hospital building looks more like a mall or an office building than a hospital when you first enter. Maybe that's a good thing.
These next few have to do with PET scans
3. I still have to do a pregnancy test before every PET scan. And before the test I also fill out a form asking me if I'm pregnant. First, why bother to ask me if you're going to give me a test anyway. Second, I always find it strange to be asked if I'm pregnant. I always say no (at least when I'm not) but I always think "I guess I could be?" The new show "I Didn't Know I Was Pregnant" just reinforces the ridiculousness of this question. Third, why can't I just pee on a stick? Aren't those tests like 99.9% effective now?
4. I also got a Homeland Security card at my PET scan the last time which I could give to customs people if I set off a metal detector or something, since this nuclear medicine would be in my system for 24 hours or so. I am kinda bummed I didn't get to use it. But seriously, do I want something circulating around in my body that could have set off a metal detector?
5. It is strange to come home and find strange stickers on your body that you didn't even know were there!
6. I was psyched to have gotten my period this month since it means that all that reproductive stuff probably hasn't been obliterated by the radiation or anything. At least not yet. (Sorry to get so personal!)
7. I feel more tired now. And sometimes a little nauseous after my treatment. But then I wonder if it's my mind playing tricks on me or if I'm tired for un-related reasons. And then it seems kinda silly to be having this whole debate with myself.
I think that's all I had for this list for now. I need to go play with a new Thomas the Train set. It has been a merry christmas for me. I hope so for you too, if you celebrate Christmas. And if you don't, I hope you had some delicious sushi and watched some good movies.
I started collecting some things in my head that are just strike me as weird.
1. Sometimes I'll forget that I'm wearing a hospital bracelet many hours after I've left the hospital. I was so not the type to do that in the past. I hope no one has noticed.
2. When I enter the main entrance of the main hospital building, I wonder every time why there aren't people with limbs hanging off or other screaming emergencies. I can see the emergency wing right off to the side. In many ways the main hospital building looks more like a mall or an office building than a hospital when you first enter. Maybe that's a good thing.
These next few have to do with PET scans
3. I still have to do a pregnancy test before every PET scan. And before the test I also fill out a form asking me if I'm pregnant. First, why bother to ask me if you're going to give me a test anyway. Second, I always find it strange to be asked if I'm pregnant. I always say no (at least when I'm not) but I always think "I guess I could be?" The new show "I Didn't Know I Was Pregnant" just reinforces the ridiculousness of this question. Third, why can't I just pee on a stick? Aren't those tests like 99.9% effective now?
4. I also got a Homeland Security card at my PET scan the last time which I could give to customs people if I set off a metal detector or something, since this nuclear medicine would be in my system for 24 hours or so. I am kinda bummed I didn't get to use it. But seriously, do I want something circulating around in my body that could have set off a metal detector?
5. It is strange to come home and find strange stickers on your body that you didn't even know were there!
6. I was psyched to have gotten my period this month since it means that all that reproductive stuff probably hasn't been obliterated by the radiation or anything. At least not yet. (Sorry to get so personal!)
7. I feel more tired now. And sometimes a little nauseous after my treatment. But then I wonder if it's my mind playing tricks on me or if I'm tired for un-related reasons. And then it seems kinda silly to be having this whole debate with myself.
I think that's all I had for this list for now. I need to go play with a new Thomas the Train set. It has been a merry christmas for me. I hope so for you too, if you celebrate Christmas. And if you don't, I hope you had some delicious sushi and watched some good movies.
Sunday, December 20, 2009
US: I could give you an exclusive
So, one of my hometown friends told me that I should friend Ethan Zohn on Facebook. He is the Survivor winner whom I went to high school with and who now has lymphoma. She is FB friends with him and said he has some motivational cancer stuff to say on his page. Perhaps, dare I say, more motivational than this blog, for instance?
So, I sent him a brief note and basically the gist of it was, "We graduated together and I have cancer too." I didn't hear back for a few days. I was ready to write him off and then he accepted my invite and sent me a very nice note. The nice thing about it was that it was not at all generic or "why are you contacting me?". Quite the contrary. It was friendly, familiar, and encouraging.
Two things:
One, I know it's been almost 20 years now (Dear God) since high school, but I'm still SO glad it's over. A big part of the problem was me. I was so ridiculously shy and insecure and generally not evolved. But the problem of the rigid high school social structure also completely fueled that particular personality. So I just feel grateful that when we become true adults, we can judge each other at face value and, for the most part, we get over judging people on things like: what they wear, who their friends are, how rich they are, what sports they play, and how sexually experienced they are to name but a few. I know that the Breakfast Club already explained all this to you, but boy was John Hughes ever right.
Two, Ethan has been through the ringer and still has to be in isolation for 30 days for a stem cell transplant, but he has an incredibly upbeat attitude. Maybe that's why he won a million dollars on Survivor. It made me feel a little guilty for having a less than stellar attitude at times. Ahem.
I'm just going to justify it to myself this way. Unlike Ethan, People Magazine doesn't care what I have to say about cancer. So for this blog, for myself and for you, I'm gonna continue keeping it real.
So, I sent him a brief note and basically the gist of it was, "We graduated together and I have cancer too." I didn't hear back for a few days. I was ready to write him off and then he accepted my invite and sent me a very nice note. The nice thing about it was that it was not at all generic or "why are you contacting me?". Quite the contrary. It was friendly, familiar, and encouraging.
Two things:
One, I know it's been almost 20 years now (Dear God) since high school, but I'm still SO glad it's over. A big part of the problem was me. I was so ridiculously shy and insecure and generally not evolved. But the problem of the rigid high school social structure also completely fueled that particular personality. So I just feel grateful that when we become true adults, we can judge each other at face value and, for the most part, we get over judging people on things like: what they wear, who their friends are, how rich they are, what sports they play, and how sexually experienced they are to name but a few. I know that the Breakfast Club already explained all this to you, but boy was John Hughes ever right.
Two, Ethan has been through the ringer and still has to be in isolation for 30 days for a stem cell transplant, but he has an incredibly upbeat attitude. Maybe that's why he won a million dollars on Survivor. It made me feel a little guilty for having a less than stellar attitude at times. Ahem.
I'm just going to justify it to myself this way. Unlike Ethan, People Magazine doesn't care what I have to say about cancer. So for this blog, for myself and for you, I'm gonna continue keeping it real.
Thursday, December 17, 2009
Fire with Fire
We went to a talk about Proton Therapy yesterday at MGH. It was given by a physicist who works with the Cyclotron at MGH. Some of it was over our heads (I took double English instead of Physics in high school, big mistake), but it was still completely fascinating. In some ways, I feel like a part of history. The MGH proton center started treating patients in 2002, but in the next couple of years, these centers will be popping up all over the place and I think this will be THE radiation that treats cancer moving forward.
I got hung up on one part of the talk though. He described how this therapy leaves neutrons in your body which just kinda float around indefinitely and can possibly cause, you guessed it, cancer anywhere else in the body.
He said this pretty matter-of-factly. And it didn't send shockwaves through the room or anything. For one, all us patients in the room recognize that we are damn lucky to be getting proton therapy because it's the only thing that's going to help us. For two, most patients in the room had between 15-30 years on me, so maybe they're not as worried about the cancer they might get 20 odd years from now when they'll be 65, 75, 85. I'll be 55 in 20 years though. I want to see what C does when she's done with college. Especially if I'm paying for college.
This radiation concept isn't new to me. We have a hunch that the radiation Wendy received for her lymphoma caused her pancreatic cancer later in life.
Then there was the report this week that CT scans cause cancer. I had never had a CT scan before 2008, but since my diagnosis they've been fast and furious. I think it's been somewhere between 8 and 10 in the past year and a half.
How much should I be worrying about all this? I have no idea. You can drive yourself crazy and then that will kill you. And I'm not a person who was wired to worry. I'm just not good at it.
I know that the right thing to do right now is to not think about what might happen to my health in the future. And maybe there is something to that Neutron Dance the Pointer Sisters told us about.
I got hung up on one part of the talk though. He described how this therapy leaves neutrons in your body which just kinda float around indefinitely and can possibly cause, you guessed it, cancer anywhere else in the body.
He said this pretty matter-of-factly. And it didn't send shockwaves through the room or anything. For one, all us patients in the room recognize that we are damn lucky to be getting proton therapy because it's the only thing that's going to help us. For two, most patients in the room had between 15-30 years on me, so maybe they're not as worried about the cancer they might get 20 odd years from now when they'll be 65, 75, 85. I'll be 55 in 20 years though. I want to see what C does when she's done with college. Especially if I'm paying for college.
This radiation concept isn't new to me. We have a hunch that the radiation Wendy received for her lymphoma caused her pancreatic cancer later in life.
Then there was the report this week that CT scans cause cancer. I had never had a CT scan before 2008, but since my diagnosis they've been fast and furious. I think it's been somewhere between 8 and 10 in the past year and a half.
How much should I be worrying about all this? I have no idea. You can drive yourself crazy and then that will kill you. And I'm not a person who was wired to worry. I'm just not good at it.
I know that the right thing to do right now is to not think about what might happen to my health in the future. And maybe there is something to that Neutron Dance the Pointer Sisters told us about.
Monday, December 14, 2009
Waiting
Let me set the scene of the Proton Therapy waiting room for you. It's somewhat interesting.
When you walk in, Paul is usually at the front desk. He DOES NOT sit down. Ever. His computer is set up so he can type while standing. I don't think it's a physical condition or anything. He is just one of those nervous energy kind of guys who probably had a lot of trouble focusing in English class. D thinks his job is mainly to keep people happy, but I think there's probably a bit more to it than that.
The families with young kids usually stay on the right side of the room. This makes sense because it's nearer to the kids' treatment area, so the parents can jump up and go back when the kids wake up from anesthesia. It's also nearer to the toy area. The pediatric nurse seems really nice. She has a lot of flair on her jacket and wears scrubs that have Winnie the Pooh on them, and things like that. I usually don't really approve when adults wear Disney or other character-themed clothing, but I've decided that, in her case, it is more than acceptable. She is clearly doing it to lift the spirits of the kids, whereas some adults genuinely think they look fierce in a Tigger sweatshirt.
The older folks sit on the right side of the room, near the changing rooms and adult treatment area. Maybe they don't want to have to walk very far when they're called to treatment. Is that a horrible thing to say or what? It's tough seeing the kids, but I also have a hard time seeing the people in their 60s or 70s who are really struggling. At least the kids have youth on their side.
I usually sit in the middle, which is where I belong both literally and figuratively. There are really not many other of us 30-something types there. I wonder if this is true of cancer demographics in general. I think that's a great thing about the Livestrong foundation, it's really focused on young adults with cancer, which was probably a somewhat overlooked demographic before. I don't really know, but I'm just guessing.
I usually go to change and go straight back to treatment, but there is a whole other world back there behind the waiting room. There are tons of exam rooms and offices and the other day I passed a room that was filled with toys exclusively for the siblings of the kids there for treatment. They have truly thought of everything.
When you walk in, Paul is usually at the front desk. He DOES NOT sit down. Ever. His computer is set up so he can type while standing. I don't think it's a physical condition or anything. He is just one of those nervous energy kind of guys who probably had a lot of trouble focusing in English class. D thinks his job is mainly to keep people happy, but I think there's probably a bit more to it than that.
The families with young kids usually stay on the right side of the room. This makes sense because it's nearer to the kids' treatment area, so the parents can jump up and go back when the kids wake up from anesthesia. It's also nearer to the toy area. The pediatric nurse seems really nice. She has a lot of flair on her jacket and wears scrubs that have Winnie the Pooh on them, and things like that. I usually don't really approve when adults wear Disney or other character-themed clothing, but I've decided that, in her case, it is more than acceptable. She is clearly doing it to lift the spirits of the kids, whereas some adults genuinely think they look fierce in a Tigger sweatshirt.
The older folks sit on the right side of the room, near the changing rooms and adult treatment area. Maybe they don't want to have to walk very far when they're called to treatment. Is that a horrible thing to say or what? It's tough seeing the kids, but I also have a hard time seeing the people in their 60s or 70s who are really struggling. At least the kids have youth on their side.
I usually sit in the middle, which is where I belong both literally and figuratively. There are really not many other of us 30-something types there. I wonder if this is true of cancer demographics in general. I think that's a great thing about the Livestrong foundation, it's really focused on young adults with cancer, which was probably a somewhat overlooked demographic before. I don't really know, but I'm just guessing.
I usually go to change and go straight back to treatment, but there is a whole other world back there behind the waiting room. There are tons of exam rooms and offices and the other day I passed a room that was filled with toys exclusively for the siblings of the kids there for treatment. They have truly thought of everything.
Thursday I am switching things up and going to conventional radiation. I'll be doing that about once a week, in the middle of my proton treatments. I guess the idea is to minimize the skin damage of the proton treatment in order to promote better healing after surgery.
Don't know if there will be any side effects with that. I'll report back with anything interesting.
Saturday, December 12, 2009
We got spirit
I am starting to get into the Christmas spirit. It's true.
We went to get our tree today and I can see why people say that Christmas is for children. C doesn't even know yet who this Santa person is and/or what he can do for her, but boy is she excited. The Christmas lights alone are thrilling for her. D put some up on our back porch and at night she is just beside herself when she sees them. She begs to go outside and run alongside them and she bursts into fits of giggles and glee. It really is the cutest thing. Maybe this is the purest expression of Christmas wonder and delight that there is, and it's all downhill from here. So I'll enjoy it this year when she doesn't know she is supposed to NEED that Zhu Zhu whatever-whatsit that is made overseas and doomed to be forgotten a week or two after opening.
So this childhood excitement is certainly contagious and it makes you appreciate the holidays all over again. Even the songs don't feel as if you've heard them=500 times x the 35 years that you've lived.
A toddler Christmas is not without its perils though. C is also very excited, yet confused, to have a tree, just like one of those trees outdoors, in our house. It is really hard for her not to touch it , even if we tell her not to in firm or alarmed tones of voice. And she paid the tree the highest form of compliment tonight when she sang "Happy Birthday" to it.
We are living on the edge by keeping it in the living room this year as opposed to the closed-door office. As a result, it looks pretty underdressed at the bottom, which I'm sure is a familiar style for anyone with children or especially enthusiastic pets. I think we can declare victory if only 5 ornaments are broken over the season. One down tonight.
I still wish I didn't have Christmas shopping hanging over my head, but so be it. I just want to give presents without having to hunt them down.
Off to Amazon!
We went to get our tree today and I can see why people say that Christmas is for children. C doesn't even know yet who this Santa person is and/or what he can do for her, but boy is she excited. The Christmas lights alone are thrilling for her. D put some up on our back porch and at night she is just beside herself when she sees them. She begs to go outside and run alongside them and she bursts into fits of giggles and glee. It really is the cutest thing. Maybe this is the purest expression of Christmas wonder and delight that there is, and it's all downhill from here. So I'll enjoy it this year when she doesn't know she is supposed to NEED that Zhu Zhu whatever-whatsit that is made overseas and doomed to be forgotten a week or two after opening.
So this childhood excitement is certainly contagious and it makes you appreciate the holidays all over again. Even the songs don't feel as if you've heard them=500 times x the 35 years that you've lived.
A toddler Christmas is not without its perils though. C is also very excited, yet confused, to have a tree, just like one of those trees outdoors, in our house. It is really hard for her not to touch it , even if we tell her not to in firm or alarmed tones of voice. And she paid the tree the highest form of compliment tonight when she sang "Happy Birthday" to it.
We are living on the edge by keeping it in the living room this year as opposed to the closed-door office. As a result, it looks pretty underdressed at the bottom, which I'm sure is a familiar style for anyone with children or especially enthusiastic pets. I think we can declare victory if only 5 ornaments are broken over the season. One down tonight.
I still wish I didn't have Christmas shopping hanging over my head, but so be it. I just want to give presents without having to hunt them down.
Off to Amazon!
Wednesday, December 9, 2009
Pros
I didn't feel so down after treatment today. In fact, I felt just fine. I wonder if it had anything to do with the holiday lunch (with wine), I went to beforehand. Maybe I need to drink before all treatments? Also, I think not having to take the T back to work afterwards also helped.
Since I've never been a subway commuter, at first I was kind of excited to get my Charlie card and take the T regularly to and from the city. It felt so grown up and urban. The novelty wore off on about the 2nd day, when the train was jammed and I couldn't sit down. Also, I saw a rat on the platform today. Not the rails, the platform. Rats absolutely make my skin crawl. So, yes T, our flirtation is over and I'm just not that into you.
In the spirit of staying upbeat and neatly segueing from my last post, here are some pros to my treatment:
1. D has been really great. On my first day he gave me a pretty ring as a present and when I jokingly asked if I'd get a present every day of my treatment, he took me seriously and has obliged. No, I'm not getting a Tiffany bracelet every day. The other day for example, I got some of those post-it flags, but these ones say, "F*ck this" and "F*ck that", but with "u"s. I really like them, but I'm a little stumped on an appropriate occasion to use them. Any suggestions are welcome. Anyway, he is trying to be as supportive as he possibly can and I am so grateful for that.
2. I am eligible for a free makeover with products donated by Chanel and MAC. And, unlike department store "free makeovers", no one will want or expect me to buy anything. While I am a little reluctant to cash this in since I feel a little embarassed and unworthy, I am also a sucker for anything free. I am the person who CANNOT pass up a free sample of any kind in the grocery store. D is always five aisles ahead of me while I am trying out three different types of hummus. It's embarassing, but I can't help myself.
3. There is that previously mentioned cancer garden. I haven't gotten back there since the first day though.
4. There is a Starbucks across the street and it is Peppermint Mocha season. Despite the fact that they have about 50,000 calories each and they're just a beverage, I justify seasonal latte's by telling myself, "They only come but once a year!"
5. I can park at MGH for as long as I want for just $4. Bet you wish you had cancer now!
6. There is the odd nice moment in the waiting room. The other day a 6 or 7 year old girl had her last treatment and got to ring "The Bell" commemorating that. Everyone applauded, and I, of course, got a lump in my throat.
That's a good list for now. If I think of any more pros I'll write them up later.
Since I've never been a subway commuter, at first I was kind of excited to get my Charlie card and take the T regularly to and from the city. It felt so grown up and urban. The novelty wore off on about the 2nd day, when the train was jammed and I couldn't sit down. Also, I saw a rat on the platform today. Not the rails, the platform. Rats absolutely make my skin crawl. So, yes T, our flirtation is over and I'm just not that into you.
In the spirit of staying upbeat and neatly segueing from my last post, here are some pros to my treatment:
1. D has been really great. On my first day he gave me a pretty ring as a present and when I jokingly asked if I'd get a present every day of my treatment, he took me seriously and has obliged. No, I'm not getting a Tiffany bracelet every day. The other day for example, I got some of those post-it flags, but these ones say, "F*ck this" and "F*ck that", but with "u"s. I really like them, but I'm a little stumped on an appropriate occasion to use them. Any suggestions are welcome. Anyway, he is trying to be as supportive as he possibly can and I am so grateful for that.
2. I am eligible for a free makeover with products donated by Chanel and MAC. And, unlike department store "free makeovers", no one will want or expect me to buy anything. While I am a little reluctant to cash this in since I feel a little embarassed and unworthy, I am also a sucker for anything free. I am the person who CANNOT pass up a free sample of any kind in the grocery store. D is always five aisles ahead of me while I am trying out three different types of hummus. It's embarassing, but I can't help myself.
3. There is that previously mentioned cancer garden. I haven't gotten back there since the first day though.
4. There is a Starbucks across the street and it is Peppermint Mocha season. Despite the fact that they have about 50,000 calories each and they're just a beverage, I justify seasonal latte's by telling myself, "They only come but once a year!"
5. I can park at MGH for as long as I want for just $4. Bet you wish you had cancer now!
6. There is the odd nice moment in the waiting room. The other day a 6 or 7 year old girl had her last treatment and got to ring "The Bell" commemorating that. Everyone applauded, and I, of course, got a lump in my throat.
That's a good list for now. If I think of any more pros I'll write them up later.
Monday, December 7, 2009
The cons
I do find myself getting down a lot more than I'd expected. I don't think it's the "I'm gonna die stuff" that freaked me out initially. I think I've shelved most of those thoughts pretty successfully. I think a lot of it might be the subconcious effects of what I see in the waiting room. And here is a little list about the other things that just put me in a funk.
1. My weekday schedule is not my own. I have very little control over when I am scheduled, and no idea how long I will wait when I do know my schedule.
2. It's kinda tough to get my job done in the time I am in the office these days.
3. Even if I'm doing the best I can at the office, we're under-resourced generally and when clients complain I can't muster any empathy. Clients are generally driving me crazy and I have no patience for them right now. So I'm faking patience as best I can.
4. Some people have disappointed me. I think maybe my expectations were set too high. And it's weird when people want you to let them know what they can do, but when you do that later, they've forgotten and/or don't recognize it for what it is.
5. I've basically been doing treatment on an extended lunch hour, which sucks.
6. Lately I've avoided telling a couple of new acquaintances in an effort to spare them the awkwardness and baggage but sometimes I think that I come across as being aloof and as though I have such a busy, important schedule (since I'm a slave to my treatment schedule).
Anyway, there is more, but I will whine more later. I also have the requisite guilt about being a complainer, so add that to the list. But I'm trying to be honest on this blog. The completely honest blogs I follow are undoubtedly the best.
1. My weekday schedule is not my own. I have very little control over when I am scheduled, and no idea how long I will wait when I do know my schedule.
2. It's kinda tough to get my job done in the time I am in the office these days.
3. Even if I'm doing the best I can at the office, we're under-resourced generally and when clients complain I can't muster any empathy. Clients are generally driving me crazy and I have no patience for them right now. So I'm faking patience as best I can.
4. Some people have disappointed me. I think maybe my expectations were set too high. And it's weird when people want you to let them know what they can do, but when you do that later, they've forgotten and/or don't recognize it for what it is.
5. I've basically been doing treatment on an extended lunch hour, which sucks.
6. Lately I've avoided telling a couple of new acquaintances in an effort to spare them the awkwardness and baggage but sometimes I think that I come across as being aloof and as though I have such a busy, important schedule (since I'm a slave to my treatment schedule).
Anyway, there is more, but I will whine more later. I also have the requisite guilt about being a complainer, so add that to the list. But I'm trying to be honest on this blog. The completely honest blogs I follow are undoubtedly the best.
Saturday, December 5, 2009
co-inkydinks
After my treatment on Tuesday, we decided to check out the cancer garden. This is obviously not the official name. They don't grow cancer there or anything. But it's this beautiful indoor/outdoor garden on the 8th floor of the cancer center where cancer patients are welcome to come for some "serenity now". I have to admit, it works. It's beautiful. The outside roofdeck garden has stunning views of the Boston skyline. I am glad there are wealthy people who are willing to underwrite such things. These things do actually make a difference, so, thank you wealthy people.
There is also an inspiration wall on the 8th with stories of cancer survivors. We immediately recognized a photo of the world-famous orthopaedist from BI who diagnosed me (he was previously based at MGH). While I found him less than cuddly at my diagnosis (in fact, it was downright awkward), the woman who wrote this testimonial of her cancer story, and about him, said that he was really the only doctor she trusted completely. Who knew? It's funny how your individual experiences can be so vastly different. I do credit this BI doctor with putting a word in to hook me up with the cream of the crop talent on chordomas at MGH. I'm pretty sure, from the comments of my present surgeon, that that happened either over emails or cocktails, but the important thing is that it happened, and I am eternally grateful for that.
We also visited the cancer resource room, where they have tons of books you can check out on cancer, and a few computers. On the cover of one of the free magazines they distribute was my high school classmate, the now-famous Ethan Zohn. If he is not famous to you, you probably have good television taste. He was the winner of one of the early, more popular seasons of "Survivor". Gosh, I never thought until this very moment what meaning that show title has for him now!
He is currently battling Hodgkins Lymphoma. I had a big crush on him my freshman year in high school, when he had a really unfortunate hairdo and didn't know I existed. I did manage to get over the crush, and the hairdo, pretty quickly. I do think now though that it was a weird coincidence seeing him on the cover of that magazine. We lead vastly disparate lives, yet there is this slight thread connecting us again now. Maybe seeing that cover was just a sign of, "You're not alone. There are people your age, heck even people you vaguely know, with cancer." I don't know. But it did make me feel a little bit better.
There is also an inspiration wall on the 8th with stories of cancer survivors. We immediately recognized a photo of the world-famous orthopaedist from BI who diagnosed me (he was previously based at MGH). While I found him less than cuddly at my diagnosis (in fact, it was downright awkward), the woman who wrote this testimonial of her cancer story, and about him, said that he was really the only doctor she trusted completely. Who knew? It's funny how your individual experiences can be so vastly different. I do credit this BI doctor with putting a word in to hook me up with the cream of the crop talent on chordomas at MGH. I'm pretty sure, from the comments of my present surgeon, that that happened either over emails or cocktails, but the important thing is that it happened, and I am eternally grateful for that.
We also visited the cancer resource room, where they have tons of books you can check out on cancer, and a few computers. On the cover of one of the free magazines they distribute was my high school classmate, the now-famous Ethan Zohn. If he is not famous to you, you probably have good television taste. He was the winner of one of the early, more popular seasons of "Survivor". Gosh, I never thought until this very moment what meaning that show title has for him now!
He is currently battling Hodgkins Lymphoma. I had a big crush on him my freshman year in high school, when he had a really unfortunate hairdo and didn't know I existed. I did manage to get over the crush, and the hairdo, pretty quickly. I do think now though that it was a weird coincidence seeing him on the cover of that magazine. We lead vastly disparate lives, yet there is this slight thread connecting us again now. Maybe seeing that cover was just a sign of, "You're not alone. There are people your age, heck even people you vaguely know, with cancer." I don't know. But it did make me feel a little bit better.
Friday, December 4, 2009
The best Elton I've ever heard
I'm overdue on posting. But, I have been kinda grumpy the past couple of days, and I did promise a post that was slightly more uplifting, so I spared you.
Anyway, back to my treatment.
When I got in on Tuesday, they called me and D in to check out the Proton Beam therapy setup. It is a pretty wild. D got the full tour, but I didn't get that since they eventually decided I needed to change. Robbed. I will not do this apparatus justice in my description, so I really need to muster the courage to take some photos and post them on this blog. For now though, I'll try to describe it. Essentially, you walk in and there is a table suspended within a circular room. It does look a bit sci-fi. There are x-ray machines that pop out of nowhere over your body and start taking pictures. Somewhat like papparazzi I imagine. They've also created these large, very heavy looking, customized brass fixtures just for me, which harness the beam. There is a shelf in the room and all of the fixtures (yes, I'm sure this is the wrong word) sit on the shelf and mine are right there on the shelf with my name underneath. Are you still doubting that I'm special? D and I are both speculating as to whether I'll get to keep these fixtures when this is over.
After I got dressed, (one of the gowns they handed me was certainly for someone about to undergo gastric bypass surgery. I assumed that was some sort of horrible mistake and tried not to take it personally.) I went back and got onto the table. As expected, they pushed me around. Just like the setup appointment, I am supposed to just lie there and let them move me and not "help" them by scootching where I think they want me to go. This is a hard habit to override. I'm still trying to get used to not "helping" since my "help" probably drives them bananas when they are supposed to be very precise about my position.
They made larger marks near my tattoos with magic marker, which they retouch every time I visit, to compensate for daily bathing. I got a little self conscious about this the other day when I was changing for the swim class I take with C. I don't think anyone saw my markups, but if they did, I'm sure they'd wonder why I have purple magic marker targets on my hips and stomach. Maybe I should write, "It's nothing kinky, I swear." underneath, for my next locker room visit.
So a couple of minutes after I got on the table, the circular room literally moved. No one warned me about this! It was one of those optical-illusion moments, where you think you are moving when you're not. Is that what the Turkish Twist is like at the carnival? I can't quite remember. Anyway, I just stayed calm and assumed that if I was going to flip over while I was lying unrestrained on a table, someone would probably rush in and try to stop it, wouldn't they? That just has malpractice written all over it.
I did quickly realize that this was just an optical illusion, and the table wasn't actually moving, the room was. It did remind me a bit of bedspins though, after a night of a tad too much fun. I didn't have the preliminary fun to show for it though, or, fortunately, the vomiting afterwards.
Anyway, the whole shebang really didn't take very long. A Christopher Cross song, one of Chicago's greatest hits, and Elton John's "Daniel" and we were done. I've also realized that the satellite music stations are switched up by particular techs. This particular day, the station had to have been chosen by the short, friendly, late forties/early-fifties guy. The next day, I guessed by the Katy Perry and Britney Spears that it was the female tech in her late twenties calling the shots. It is a good room to listen to music in, I must say. This $30-$40 million dollar room has great acoustics! They've said I can bring in a CD if I want (they're not Ipod-ready yet, did I really say $30-40 million?). I might have to do that just once. D and I agreed that MGMT would be pretty fun in there.
I did feel a slight twinge of physical discomfort in the radiated area afterwards and occasionally in the days since. Still, nothing bad. Nothing I'd even take a Tylenol over.
More to come on the rest of that day and bits and bobs from the days since....
Anyway, back to my treatment.
When I got in on Tuesday, they called me and D in to check out the Proton Beam therapy setup. It is a pretty wild. D got the full tour, but I didn't get that since they eventually decided I needed to change. Robbed. I will not do this apparatus justice in my description, so I really need to muster the courage to take some photos and post them on this blog. For now though, I'll try to describe it. Essentially, you walk in and there is a table suspended within a circular room. It does look a bit sci-fi. There are x-ray machines that pop out of nowhere over your body and start taking pictures. Somewhat like papparazzi I imagine. They've also created these large, very heavy looking, customized brass fixtures just for me, which harness the beam. There is a shelf in the room and all of the fixtures (yes, I'm sure this is the wrong word) sit on the shelf and mine are right there on the shelf with my name underneath. Are you still doubting that I'm special? D and I are both speculating as to whether I'll get to keep these fixtures when this is over.
After I got dressed, (one of the gowns they handed me was certainly for someone about to undergo gastric bypass surgery. I assumed that was some sort of horrible mistake and tried not to take it personally.) I went back and got onto the table. As expected, they pushed me around. Just like the setup appointment, I am supposed to just lie there and let them move me and not "help" them by scootching where I think they want me to go. This is a hard habit to override. I'm still trying to get used to not "helping" since my "help" probably drives them bananas when they are supposed to be very precise about my position.
They made larger marks near my tattoos with magic marker, which they retouch every time I visit, to compensate for daily bathing. I got a little self conscious about this the other day when I was changing for the swim class I take with C. I don't think anyone saw my markups, but if they did, I'm sure they'd wonder why I have purple magic marker targets on my hips and stomach. Maybe I should write, "It's nothing kinky, I swear." underneath, for my next locker room visit.
So a couple of minutes after I got on the table, the circular room literally moved. No one warned me about this! It was one of those optical-illusion moments, where you think you are moving when you're not. Is that what the Turkish Twist is like at the carnival? I can't quite remember. Anyway, I just stayed calm and assumed that if I was going to flip over while I was lying unrestrained on a table, someone would probably rush in and try to stop it, wouldn't they? That just has malpractice written all over it.
I did quickly realize that this was just an optical illusion, and the table wasn't actually moving, the room was. It did remind me a bit of bedspins though, after a night of a tad too much fun. I didn't have the preliminary fun to show for it though, or, fortunately, the vomiting afterwards.
Anyway, the whole shebang really didn't take very long. A Christopher Cross song, one of Chicago's greatest hits, and Elton John's "Daniel" and we were done. I've also realized that the satellite music stations are switched up by particular techs. This particular day, the station had to have been chosen by the short, friendly, late forties/early-fifties guy. The next day, I guessed by the Katy Perry and Britney Spears that it was the female tech in her late twenties calling the shots. It is a good room to listen to music in, I must say. This $30-$40 million dollar room has great acoustics! They've said I can bring in a CD if I want (they're not Ipod-ready yet, did I really say $30-40 million?). I might have to do that just once. D and I agreed that MGMT would be pretty fun in there.
I did feel a slight twinge of physical discomfort in the radiated area afterwards and occasionally in the days since. Still, nothing bad. Nothing I'd even take a Tylenol over.
More to come on the rest of that day and bits and bobs from the days since....
Wednesday, December 2, 2009
The kids aren't all right
The toughest part of my first day of treatment was precisely what I thought it would be. Seeing the kids.
This type of radiation is often used for clival chordomas and other brain tumors since the impact on the surrounding tissue is minimal. So, a lot of these kids have brain tumors.
My appointment was on the early side of the afternoon and when we arrived there was a girl, around C's age, toddling around. Most of her hair was gone, but she didn't seem too bothered about that. At one point, Paul at the desk got off the phone and announced "Lucas is awake!". I gathered that this meant that Lucas was awake from the anesthesia he was under to have treatment. Lucas's parents got up from the waiting room and brought him back. He had the same non-hairdo as the little girl and was also about C's age. They were both contentedly sucking on their pacifiers.
I'd been thinking of when to break C of her bedtime pacifier habit. Since she's almost two, I was wondering if we should try to tackle it on my break before surgery or if we should just put it off until I'm through with all this. Seeing these kids with their paci's made me think though, it must not even occur to their parents to consider weaning them off the habit. For one, it's such a non-issue when you have so many larger issues to contend with. For another, I think, if I were in their shoes, I'd feel that anything that would bring the slightest bit of comfort and security to my child while they are going through this is what I would want for them, for as long as they would want it.
When I've been stuck in MRIs and CT scans over the past few months and I've had too much time to think, I've started feeling sorry for myself sometimes (particularly with the MRIs because I hate them.) But the thought that has snapped me back on track when I go down that road is, "Better me than C." And I instantly feel better. Sincerely.
I've always felt bad when I've heard about bad things happening to kids. But that feeling intensified about a thousandfold after I became a mother myself. It took me by surprise actually. Hearing about a kid who has suffered, no matter whose kid it is, feels more like a sharp kick in the stomach now, whereas before it must have felt more removed.
So, seeing these kids was tough. I had lumps in my throat for sure. And if I looked over at D, I knew he knew what I was thinking and he was thinking pretty much the same thing, which just aggravated the feeling. So I reached for a magazine (is there a pattern emerging here?) Breaking down in the waiting room is not going to help anyone, least of all these kids or their parents.
Am I going to get used to this?
P.S. Jared Vance was a great kid and just 7 years old when he died from a clival chordoma on Monday. If you are thankful for your healthy kids, grandkids, nieces and nephews, and/or neighborhood troublemakers, you can donate to The Chordoma Foundation on his behalf at: http://champions.chordomafoundation.org/pages/180. I bet you won't even miss the money and it will be money well spent.
P.P.S. I have some lighter posts ruminating, don't worry. I still plan to update you on my own experiences of the past couple of days and it is much less grave, I promise.
This type of radiation is often used for clival chordomas and other brain tumors since the impact on the surrounding tissue is minimal. So, a lot of these kids have brain tumors.
My appointment was on the early side of the afternoon and when we arrived there was a girl, around C's age, toddling around. Most of her hair was gone, but she didn't seem too bothered about that. At one point, Paul at the desk got off the phone and announced "Lucas is awake!". I gathered that this meant that Lucas was awake from the anesthesia he was under to have treatment. Lucas's parents got up from the waiting room and brought him back. He had the same non-hairdo as the little girl and was also about C's age. They were both contentedly sucking on their pacifiers.
I'd been thinking of when to break C of her bedtime pacifier habit. Since she's almost two, I was wondering if we should try to tackle it on my break before surgery or if we should just put it off until I'm through with all this. Seeing these kids with their paci's made me think though, it must not even occur to their parents to consider weaning them off the habit. For one, it's such a non-issue when you have so many larger issues to contend with. For another, I think, if I were in their shoes, I'd feel that anything that would bring the slightest bit of comfort and security to my child while they are going through this is what I would want for them, for as long as they would want it.
When I've been stuck in MRIs and CT scans over the past few months and I've had too much time to think, I've started feeling sorry for myself sometimes (particularly with the MRIs because I hate them.) But the thought that has snapped me back on track when I go down that road is, "Better me than C." And I instantly feel better. Sincerely.
I've always felt bad when I've heard about bad things happening to kids. But that feeling intensified about a thousandfold after I became a mother myself. It took me by surprise actually. Hearing about a kid who has suffered, no matter whose kid it is, feels more like a sharp kick in the stomach now, whereas before it must have felt more removed.
So, seeing these kids was tough. I had lumps in my throat for sure. And if I looked over at D, I knew he knew what I was thinking and he was thinking pretty much the same thing, which just aggravated the feeling. So I reached for a magazine (is there a pattern emerging here?) Breaking down in the waiting room is not going to help anyone, least of all these kids or their parents.
Am I going to get used to this?
P.S. Jared Vance was a great kid and just 7 years old when he died from a clival chordoma on Monday. If you are thankful for your healthy kids, grandkids, nieces and nephews, and/or neighborhood troublemakers, you can donate to The Chordoma Foundation on his behalf at: http://champions.chordomafoundation.org/pages/180. I bet you won't even miss the money and it will be money well spent.
P.P.S. I have some lighter posts ruminating, don't worry. I still plan to update you on my own experiences of the past couple of days and it is much less grave, I promise.
Tuesday, December 1, 2009
Wendy
I've been thinking about Wendy a lot lately. She was D's stepmother. She died in 2006 of pancreatic cancer at age 46.
She was not the type of person who walked into a room and commanded your attention. She was much more understated than that. And smarter. But, somehow, family gatherings with D's side were a lot of fun when she was around. Ever since she died, they are, frankly, not very fun. And it's not because we are sitting around moping that she's gone. It's just that there is a tangible void.
When she was dying she told a friend of ours, who is a minister, that she felt she'd been so lucky in her life. For someone who had had cancer in her 20s, lost both her parents at a young age, and was now dying at 46, that might sound like an odd statement. But I do think she sincerely felt that way. She had traveled extensively, had been extremely succesful in her career, had found the love of her life and had a new family to go along with that. How she was not bitter about leaving all that behind so early, I do not know.
I hadn't been thinking about her as much in the past couple of years. But lately, with everything that has been going on, she's been on my mind more. I've been wondering how she managed to cope with having cancer twice. And I've been regretting that I had so much trouble finding something to say to her towards the end.
After she died, D's dad gave me some of her jewelry. Nothing fancy, just everyday kinds of things. I was thinking that it would be nice to wear something of hers every day that I'm going through treatment. I don't know what it means, exactly. A show of solidarity for someone we cared about, who didn't live as long as she should have, I guess. And just a reminder that we are still thinking of you, Wendy.
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