Today was my last day of chemo. At last, no more toxic drugs pumped into my system at biweekly intervals.
Honestly, chemo was starting to wear on me. Medically, some of my counts were getting pretty bad. My hemoglobin was at 10.1, and I think they would not be able to treat me at 10 (though I thought they said that at 11...). I could see how it steadily went down over the course of my treatments. As a result, I've been getting short of breath, and I could feel my heart beating after just a small amount of exertion (think walking up a flight of stairs). My platelets were also pretty low - as evidenced by how long it takes me to stop the bleeding when I get a small cut. Interestingly, my white blood count was great and always has been. That means my immune system is doing well.
Emotionally, chemo is also starting to wear on me. It's frustrating being so tired. I can't really exercise, which I don't like. I have a hard time concentrating on things, and you should hear me try to say tongue twisters - I feel so stupid. The other day we were talking at the lunch table at work, and someone mentioned a TV show character, "Hoss". I was thinking they were talking about a certain character from the "Dukes of Hazzard" (one of my favorite shows when I was little - just ask my mom how I used to climb in & out of the car... :-) And then my co-workers reminded me that he was Boss. And I said, "Oh, right, Bog Hoss". Dammit!!! They laughed because I really meant "Boss Hog". I do the same thing when I'm typing. I still type lightning fast, but I mess up the letters sometimes and I don't even know it.
Anyway, that's pretty annoying. I'm so ready for chemo to be over, but I'm also scared about what's coming next... BTW, I am meeting with the surgeon on Monday, and I will know the date of my surgery. And I still don't have a nickname for him - I think "The Butcher" is a bit dark...
So, at my appointment with Mr. Wizard, we also took at the results of my MRI. They were good. The reading radiologist wrote that only "wisps" of the tumor could be seen. Which is funny, because now I have wisps in my boobs, but no wisps of hair in my head ;-) Mr. Wizard (who I haven't seen in awhile, because I've been working with his Nurse Practitioner), was thrilled that the tumor responded so well. He said they were so excited, and that studies show that patients with "complete responses" and near "complete responses" both do very very well. Presumably, this means low incidences of recurrence and all that jazz, though I have seen studies that show that when patients don't have surgery, the recurrence is actually higher. (This makes sense - just because it's not detectable, that doesn't mean there aren't lingering cells).
Mr. Wizard said that patients who do well and have a good attitude serve as an inspiration to them - and I quote "Especially someone with your joie de vivre". It almost made me cry. I told him that I was happy about the results, but quite honestly this is what I expected. Really, I did. That, and from the very first treatment, we saw that the tumor was responding well. To me, there was no other option. I was doing chemo to shrink the tumor. If it didn't work, I don't know how I would have reacted. Luckily, that wasn't an issue.
So, I went for my last treatment and had my favorite, fabulous nurse, and I got the last remaining room with a window. I am fortunate. I would probably have had a temper tantrum if I didn't get a window room. Again, luckily that wasn't an issue.
The actual chemo infusion was pretty uneventful. I fell asleep after the Benadryl (as usual). We talked, I had lunch. It was nice. At the end, my favorite nurse told me that I should stop by and say hello when I come back in four weeks. She almost looked like she was going to give me a hug, but I felt a little weird, so I didn't. Maybe it was because I was focusing on it and she really wasn't.
Anyway, after chemo we went to Gibby's Dairy for ice cream to celebrate the milestone. Mmm... Gibby's. I had a hot fudge sundae with nuts made with Snickers ice cream. Mmm... For once, I actually got the kiddie size, and it's perfect. In my mind, kiddie seems way too small, but every time I get a regular size I wind up with a bloated stomach and a sugar hangover.
So, that's it. Chemo done. Over. Now we've got to work on the next step.
Thursday, July 31, 2008
Thursday, July 24, 2008
RSS, Part Deux (or Trois)
Okay, so here's the long-awaited follow-on RSS post. (well, at least Laura is awaiting it :-) I'm going to use GReader, because I LOVE GReader (in Google We Trust).
Anyway, go to reader.google.com. You're going to have to sign up for a new account, or log in if you already have one. Go to my blog and scroll all the way to the bottom of the page. Not yet, you still have to read my post so you know what to do next. Click on the link that says "Subscribe to: Posts (Atom)", and you'll be brought to a new page that has a drop-down menu where you'll find "google". Click "Subscribe Now", and then you'll want to click "Add to Google Reader". Voila! You'll see about 10 of my most recent posts, and you can select "Mark all as read" to get past them, and from now on you'll get my new posts when you log into GReader.
Okay, no more tech talk. I can already see Grandma's eyes glazing over. She has a different kind of RSS feed - it's called the "Dad prints them out and brings them to Grandma's house" feed. It's very retro :-)
So, some of the blogs I've been reading regularly are "Dress A Day," "Sewing Divas," and "Behind the Seams." All are sewing-related blogs where the bloggers discuss patterns, give tutorials, show projects in progress, recently completed projects, etc. I've always enjoyed sewing. I even sewed my wedding dress:
Anyway, so I've been learning all of these new techniques and alterations, and I've found cool new fabric stores on the web. I've really become a sewing geek. And I've been really wanting to get back to actually sewing again, but here's my conundrum - I'll spend all this time working on clothing that is not going to fit me in another couple of months. It may be tough to appreciate if you've never tried to sew anything before, but bust size is crucial to the fit of a garment. In fact, I actually have to make special alterations to a pattern to get the garment to fit my bust properly, which takes a lot more time. After surgery, I'll end up with a different enough bust size that all those alterations will be garbage. Not all that motivating, is it?
Then, Jocelyn and I were talking about cute clothes at our favorite store (Ann Taylor Loft), and about how we covet the new clothes but want to avoid spending too much on new clothes. Then I had a eureka - I could make clothes for her, too! She spends lots of time knitting me things, and I don't do a darn thing to reciprocate, so I am starting on sewing more with the idea that she will be able to wear the clothes that I can't :-) I'm still in the beginning stages of my first shirt (with all my newfound sewing expertise that I've gathered on my favorite sewing blogs), but I'm really excited to be able to resume an activity that makes me so happy :-)
Anyway, I hope you can make use of the RSS feed info. And if you can't, Grandma, I hope you enjoyed hearing about the sewing ;-)
Anyway, go to reader.google.com. You're going to have to sign up for a new account, or log in if you already have one. Go to my blog and scroll all the way to the bottom of the page. Not yet, you still have to read my post so you know what to do next. Click on the link that says "Subscribe to: Posts (Atom)", and you'll be brought to a new page that has a drop-down menu where you'll find "google". Click "Subscribe Now", and then you'll want to click "Add to Google Reader". Voila! You'll see about 10 of my most recent posts, and you can select "Mark all as read" to get past them, and from now on you'll get my new posts when you log into GReader.
Okay, no more tech talk. I can already see Grandma's eyes glazing over. She has a different kind of RSS feed - it's called the "Dad prints them out and brings them to Grandma's house" feed. It's very retro :-)
So, some of the blogs I've been reading regularly are "Dress A Day," "Sewing Divas," and "Behind the Seams." All are sewing-related blogs where the bloggers discuss patterns, give tutorials, show projects in progress, recently completed projects, etc. I've always enjoyed sewing. I even sewed my wedding dress:
Anyway, so I've been learning all of these new techniques and alterations, and I've found cool new fabric stores on the web. I've really become a sewing geek. And I've been really wanting to get back to actually sewing again, but here's my conundrum - I'll spend all this time working on clothing that is not going to fit me in another couple of months. It may be tough to appreciate if you've never tried to sew anything before, but bust size is crucial to the fit of a garment. In fact, I actually have to make special alterations to a pattern to get the garment to fit my bust properly, which takes a lot more time. After surgery, I'll end up with a different enough bust size that all those alterations will be garbage. Not all that motivating, is it?
Then, Jocelyn and I were talking about cute clothes at our favorite store (Ann Taylor Loft), and about how we covet the new clothes but want to avoid spending too much on new clothes. Then I had a eureka - I could make clothes for her, too! She spends lots of time knitting me things, and I don't do a darn thing to reciprocate, so I am starting on sewing more with the idea that she will be able to wear the clothes that I can't :-) I'm still in the beginning stages of my first shirt (with all my newfound sewing expertise that I've gathered on my favorite sewing blogs), but I'm really excited to be able to resume an activity that makes me so happy :-)
Anyway, I hope you can make use of the RSS feed info. And if you can't, Grandma, I hope you enjoyed hearing about the sewing ;-)
Wednesday, July 23, 2008
Update 1 on "The Joy of RSS"
As I was driving in this morning, I realized that although I described RSS, I never really explained how to get it working. Duh. Sorry about that. Then I saw Laura's comment and I realized maybe I should give an explanation on how to do it. I'm at work now and I don't quite have the time to write it up now, but I promise to give another update on instructions for using RSS with GReader. For those who are adventurous, go to reader.google.com and play around.
Monday, July 21, 2008
The Joy of RSS
Last week, I promised that I would tell you all about. If you're under 25, you probably learned about how to read an RSS feed before reading a book, so no need to go further. For everyone else, prepare to be rocked.
So, first of all, what is RSS? It stands for Really Simple Syndication (in its infant stages, it stood for Rich Site Summary). It's used to "push" content from a website to a viewer.
The idea is, a web author updates a special file every time they put new content on their website (whether it's a new article on CNN, a new blog post on Megan's Pink Blog, or a new LOLcats picture on ICanHasCheezBurger). You can look for a special symbol to verify that a website is RSS-enabled:
Usually it's a tad bit smaller on the website. To see one "in the wild", you can go to CNN's website and scroll down about 3/4 of the way to the bottom. In the left hand column, there's a cluster of links (RSS Feeds, Emails, CNN Mobile...). CNN actually has several feeds so you can determine if you want to be updated on sports news, international news, etc.
Meanwhile, from the comfort of your own home, you find your favorite reader and "subscribe" to the feed. The reader does the work of checking all of your subscriptions to see what's new. First, let's talk about readers...
I use Google Reader, or GReader as I affectionately call it. But, you can use an add-in for Microsoft Outlook so that it's delivered to you like e-mail. Or, if you use Firefox, it has a built-in reader that displays headlines from a button on the toolbar. I also have a widget on a sidebar of my regular desktop on Windows Vista that has a reader built right into it (neat-o). I like GReader the best, though.
Once you choose your reader, you need to "subscribe" to the feeds you want. Your reader has a way to do this, and most websites will even subscribe for you if you click on their RSS link (but it may or may not work with your reader). With Google's Reader you can even search for interesting feeds. And, in true Google fashion, after it gets to know you it will suggest feeds you might like.
Why is this so great? Well, if you're like I was, you have your usual route of websites that you troll on a daily basis. The problem is, sometimes you forget one. Or maybe you get distracted mid-troll and my, look at how much time has gone by and you're only half way through your list! Or maybe you're lazy. Anyway, I like that my favorite websites tell me when they have new content. It simplifies my life. And all the kids are doing it.
Rusty, looking over my shoulder (of course) has pointed out that many people may not really benefit from this because mine is the only website they read. Well, that may be true, but it would be pretty egotistical for me to think that, so I hope you find this useful.
So, first of all, what is RSS? It stands for Really Simple Syndication (in its infant stages, it stood for Rich Site Summary). It's used to "push" content from a website to a viewer.
The idea is, a web author updates a special file every time they put new content on their website (whether it's a new article on CNN, a new blog post on Megan's Pink Blog, or a new LOLcats picture on ICanHasCheezBurger). You can look for a special symbol to verify that a website is RSS-enabled:
Usually it's a tad bit smaller on the website. To see one "in the wild", you can go to CNN's website and scroll down about 3/4 of the way to the bottom. In the left hand column, there's a cluster of links (RSS Feeds, Emails, CNN Mobile...). CNN actually has several feeds so you can determine if you want to be updated on sports news, international news, etc.Meanwhile, from the comfort of your own home, you find your favorite reader and "subscribe" to the feed. The reader does the work of checking all of your subscriptions to see what's new. First, let's talk about readers...
I use Google Reader, or GReader as I affectionately call it. But, you can use an add-in for Microsoft Outlook so that it's delivered to you like e-mail. Or, if you use Firefox, it has a built-in reader that displays headlines from a button on the toolbar. I also have a widget on a sidebar of my regular desktop on Windows Vista that has a reader built right into it (neat-o). I like GReader the best, though.
Once you choose your reader, you need to "subscribe" to the feeds you want. Your reader has a way to do this, and most websites will even subscribe for you if you click on their RSS link (but it may or may not work with your reader). With Google's Reader you can even search for interesting feeds. And, in true Google fashion, after it gets to know you it will suggest feeds you might like.
Why is this so great? Well, if you're like I was, you have your usual route of websites that you troll on a daily basis. The problem is, sometimes you forget one. Or maybe you get distracted mid-troll and my, look at how much time has gone by and you're only half way through your list! Or maybe you're lazy. Anyway, I like that my favorite websites tell me when they have new content. It simplifies my life. And all the kids are doing it.
Rusty, looking over my shoulder (of course) has pointed out that many people may not really benefit from this because mine is the only website they read. Well, that may be true, but it would be pretty egotistical for me to think that, so I hope you find this useful.
Wednesday, July 16, 2008
Chemo Round 7
Round 7?! When did that happen? Wow. I'm almost done!!!! 7 down, 1 to go :-)
Anyway, let me update you on how the wonderful world of chemo is doing, and give you some details about some of the ongoing conversations and concerns I have with my doctors.
First, we started the day by arriving a half hour early. I mean really early. Let me explain. My appointment with Mr. Wizard, or his Nurse Practitioner, Julia Child, NP starts at a different time every round (the NP doesn't sound like Julia Child or dress like her, she just kind of reminds me of the way she looks). Anyway, I'm supposed to arrive a half hour early to get my blood drawn for the CBC (complete blood count). At first, they didn't tell me this, and I would just show up 15-20 minutes early, get my blood drawn, and meet with the doctor or NP. Then they formalized the process and told me to shop up a half hour early. Since then, I've been a little inconsistent about how I write this in my calendar.
Anyway, for some reason, I wrote down 9:00 AM in my calendar, but I thought we had to be there at 8:30. Turns out we had to be there for the blood counts at 9:00 and the meeting with the NP at 9:30. No problem - I'm just a half hour early, right? Yeah, right. If only it weren't for the fact that I'm embarrassingly Type A when it comes to these appointments. Why? I dunno - I don't want them to leave me out there for hours on end. Also, I want to get my good room, damnit! The longer I'm out there waiting to see the NP, the greater the chance that someone could take the last big room with a window, and we can't have that.
So, anyway, I see someone that arrived after me get called to meet with my NP. And THAT, my dear friends, is like adding lighter fluid to a pile of smoldering embers. So, the next time I saw the nurse, I asked her if I was in the queue. She informed me that my appointment was at 9:30, but she would see if they could get me in sooner. D'oh! After she called me, I apologized for being a little too Type A, and she just laughed a little - all was well.
During the appointment with the NP, she explained to me that last week my liver enzymes were way out of whack and she would not treat me if they got even a smidgen worse. We then looked at them, and she explained that last time some where at 4x the high end of normal. This time, however, things were good to go. (Hemoglobin was a low, as usual, but we're okay with that). Which makes me wonder... Did I have a beer the night before my last infusion? Or was it the orange juice mimosa and Bloody Mary the morning of? (just kidding!) Oh well - I will have to remember to avoid that next time.
We also discussed something I've been worrying about since my last infusion (in fact, this was the topic of a near full-on freakout mode a week and a half ago - that Rusty is such a sweetheart). It turns out that my surgeon (who I never gave a nickname... I'll have to think of one - I'm accepting submissions) is going on sailing for 3 weeks in the month of August. This is the one vacation he takes every year. The guy works very hard, and I do not want to suggest that he doesn't deserve a vacation, but this poses a bit of a problem to me...
You see, my last round of chemo is July 31st. Yay! I will be meeting with my surgeon on August 4th to discuss the details of the surgery and to schedule a date. From what I've read, the optimal time to schedule the surgery is 3-4 weeks after the last chemo treatment. This gives my immune system time to bounce back so that I will heal after surgery, but not quite enough time to give the cancer the opportunity to grow. The problem is that my surgeon returns from his vacation on August 28th. That puts me right at the 4 week mark, and if my surgery is delayed any more, I'm pushing 5-6 weeks.
I spoke to Julia Child about my concerns, and she did say that they were very valid questions. She then informed me that the person who was supposed to go on the trip with my surgeon just broke his leg, and it's possible (maybe even probable) that he will not get to go sailing. Ya know, as much as I shouldn't be delighting in the misfortunes of others... I guess I kind of am. After all, it's not like he has cancer.
So, although this situation isn't resolved, I'm feeling better about it because I've voiced my concerns in an assertive way. If it turns out that the trip goes on as schedule, Mr. Wizard did say that he's very happy with the response of the tumor, but we'll have to wait for the results of the MRI and the Mammogram I'm about to take tomorrow and Friday. If the response was really good, maybe it's okay to push it out to 5-6 weeks. On the other hand, it may make sense to do an extra round of chemo. I did suggest the possibility of stretching out my last round (as in, doing it in 3 weeks instead of 2), but that doesn't seem to be an option. And, finally, I could chose another surgeon. HELL NO. He's the best, and I want only the best for my boobs.
Anyway, so that appointment ended, and I walked away feeling not completely satisfied, but much better. I then went to choose my room, and I had a glorious room with a window. Yay! Next, it was time for my infusion nurse. We'll just call her Nurse Awesome because she's awesome (I normally have the same nurse, which makes me very happy - when she's not in, I'm not exactly thrilled). Anyway, Nurse Awesome tries to stick me with the IV, and for the first time, it fails. :-( She had to try a different spot, which eventually worked. I'm not really doing this part of the day justice, but it just wasn't a pleasant experience and it's so discouraging. It hurt a little, and the phlebotomist drawing for my CBC earlier in the day had trouble, too - both times hurt. I think my veins are getting pissed. Anyway, it made me cry a little because this was just such a topsy-turvy day. Eventually the IV went in and I got my Benadryl and feel asleep :-) For the rest of the day, everything was pretty standard and here we are.
So, I hope everyone is still reading. I know I've been a bit sporadic about posting lately, but I will dedicate a post on how to get my blogs more efficiently so you don't have to keep checking this website. It's called RSS, and if you don't know how to use it, it will rock your world once you do. If you want to research it in the meantime, I suggest going to your favorite browser, typing "www.google.com" in the address bar, and then typing "what is RSS" in the search bar. jk. (that's what the kids use for "just kidding") I promise to give some instructions soon.
Anyway, let me update you on how the wonderful world of chemo is doing, and give you some details about some of the ongoing conversations and concerns I have with my doctors.
First, we started the day by arriving a half hour early. I mean really early. Let me explain. My appointment with Mr. Wizard, or his Nurse Practitioner, Julia Child, NP starts at a different time every round (the NP doesn't sound like Julia Child or dress like her, she just kind of reminds me of the way she looks). Anyway, I'm supposed to arrive a half hour early to get my blood drawn for the CBC (complete blood count). At first, they didn't tell me this, and I would just show up 15-20 minutes early, get my blood drawn, and meet with the doctor or NP. Then they formalized the process and told me to shop up a half hour early. Since then, I've been a little inconsistent about how I write this in my calendar.
Anyway, for some reason, I wrote down 9:00 AM in my calendar, but I thought we had to be there at 8:30. Turns out we had to be there for the blood counts at 9:00 and the meeting with the NP at 9:30. No problem - I'm just a half hour early, right? Yeah, right. If only it weren't for the fact that I'm embarrassingly Type A when it comes to these appointments. Why? I dunno - I don't want them to leave me out there for hours on end. Also, I want to get my good room, damnit! The longer I'm out there waiting to see the NP, the greater the chance that someone could take the last big room with a window, and we can't have that.
So, anyway, I see someone that arrived after me get called to meet with my NP. And THAT, my dear friends, is like adding lighter fluid to a pile of smoldering embers. So, the next time I saw the nurse, I asked her if I was in the queue. She informed me that my appointment was at 9:30, but she would see if they could get me in sooner. D'oh! After she called me, I apologized for being a little too Type A, and she just laughed a little - all was well.
During the appointment with the NP, she explained to me that last week my liver enzymes were way out of whack and she would not treat me if they got even a smidgen worse. We then looked at them, and she explained that last time some where at 4x the high end of normal. This time, however, things were good to go. (Hemoglobin was a low, as usual, but we're okay with that). Which makes me wonder... Did I have a beer the night before my last infusion? Or was it the orange juice mimosa and Bloody Mary the morning of? (just kidding!) Oh well - I will have to remember to avoid that next time.
We also discussed something I've been worrying about since my last infusion (in fact, this was the topic of a near full-on freakout mode a week and a half ago - that Rusty is such a sweetheart). It turns out that my surgeon (who I never gave a nickname... I'll have to think of one - I'm accepting submissions) is going on sailing for 3 weeks in the month of August. This is the one vacation he takes every year. The guy works very hard, and I do not want to suggest that he doesn't deserve a vacation, but this poses a bit of a problem to me...
You see, my last round of chemo is July 31st. Yay! I will be meeting with my surgeon on August 4th to discuss the details of the surgery and to schedule a date. From what I've read, the optimal time to schedule the surgery is 3-4 weeks after the last chemo treatment. This gives my immune system time to bounce back so that I will heal after surgery, but not quite enough time to give the cancer the opportunity to grow. The problem is that my surgeon returns from his vacation on August 28th. That puts me right at the 4 week mark, and if my surgery is delayed any more, I'm pushing 5-6 weeks.
I spoke to Julia Child about my concerns, and she did say that they were very valid questions. She then informed me that the person who was supposed to go on the trip with my surgeon just broke his leg, and it's possible (maybe even probable) that he will not get to go sailing. Ya know, as much as I shouldn't be delighting in the misfortunes of others... I guess I kind of am. After all, it's not like he has cancer.
So, although this situation isn't resolved, I'm feeling better about it because I've voiced my concerns in an assertive way. If it turns out that the trip goes on as schedule, Mr. Wizard did say that he's very happy with the response of the tumor, but we'll have to wait for the results of the MRI and the Mammogram I'm about to take tomorrow and Friday. If the response was really good, maybe it's okay to push it out to 5-6 weeks. On the other hand, it may make sense to do an extra round of chemo. I did suggest the possibility of stretching out my last round (as in, doing it in 3 weeks instead of 2), but that doesn't seem to be an option. And, finally, I could chose another surgeon. HELL NO. He's the best, and I want only the best for my boobs.
Anyway, so that appointment ended, and I walked away feeling not completely satisfied, but much better. I then went to choose my room, and I had a glorious room with a window. Yay! Next, it was time for my infusion nurse. We'll just call her Nurse Awesome because she's awesome (I normally have the same nurse, which makes me very happy - when she's not in, I'm not exactly thrilled). Anyway, Nurse Awesome tries to stick me with the IV, and for the first time, it fails. :-( She had to try a different spot, which eventually worked. I'm not really doing this part of the day justice, but it just wasn't a pleasant experience and it's so discouraging. It hurt a little, and the phlebotomist drawing for my CBC earlier in the day had trouble, too - both times hurt. I think my veins are getting pissed. Anyway, it made me cry a little because this was just such a topsy-turvy day. Eventually the IV went in and I got my Benadryl and feel asleep :-) For the rest of the day, everything was pretty standard and here we are.
So, I hope everyone is still reading. I know I've been a bit sporadic about posting lately, but I will dedicate a post on how to get my blogs more efficiently so you don't have to keep checking this website. It's called RSS, and if you don't know how to use it, it will rock your world once you do. If you want to research it in the meantime, I suggest going to your favorite browser, typing "www.google.com" in the address bar, and then typing "what is RSS" in the search bar. jk. (that's what the kids use for "just kidding") I promise to give some instructions soon.
Monday, July 14, 2008
To Sir, With Love
Have you ever seen this movie?
When I was little, my Mémère showed it to me, and it left quite an impression. If you haven't seen it, I'll give a very brief synopsis but I won't do it justice (you have to see it). It's a 1967 movie starring Sidney Poitier as a high school teacher. He is in charge of a group of ruffians, just about to graduate high school. The kids are totally disrespectful and and he soon realizes that the information they need isn't in the books they can barely read - he needs to prepare them to be adults. They start out having absolutely no respect for him, blah blah, he starts treating them like adults, blah blah, they eventually come to admire and respect him, and it's a very touching story.
There is also a song by the same name, sung by Lulu, and it's the theme song to the movie. Anyway, for some reason I keep thinking of this song, especially the line right before the refrain - "How do you thank someone..." (the rest of it, which is not relevant to my post is "who has taken you from crayons to perfume..." then "It isn't easy, but I'll try..."). I think it's quite a beautiful song.
Anyway, what the heck am I talking about? Well, my mom told me I should try writing nice things (undoubtedly in reference to my not-so-nice post a week ago), and I told her that was unrealistic ;-) Then I remembered that I did complain about not getting any blog ideas, and here she was kind of giving me an idea. So, I decided to write about a nice thing for a change. This is something I've been wanting to write about for awhile, but wasn't sure how to do it.
When this song gets stuck in my head, it's because I'm wondering how you thank someone who you feel you can never ever repay for all that they have done for you. This describes several people in my life, but for this post I want to focus on Rusty. This is not to say he's the only person who has helped me. So don't be disappointed if I didn't call you out. See? That's why I told my mom I couldn't write nice things, because then people would wonder why I didn't write nice things about them. If I write mean things, no one gets jealous or upset that I didn't write about them :-)
Anyway, the spouse tends to get lost in the shuffle of a cancer patient. I don't even know how Rusty must feel. No one ever asks him. He's there for everything. He stays home from work every time I have an appointment - even if it's just to get a bone marrow booster (essentially a 15 minute appointment the day after chemo). At first, he didn't let me lift a finger at home. Then I felt it was starting to make my muscles atrophy, so I insisted that he let me do some things around the house. And he has.
When I go to the spa to get a massage or a pedicure, Rusty is at home mowing the lawn or painting the outside of the house. When I am sitting on the couch blogging, Rusty gets me more water or whatever else I need. When he's helping me make dinner, he actually makes sure he's cutting the onions exactly the way I want him to cut them. When I am feeling really crappy, he listens to all of my symptoms and offers encouragement. When I go into what I call "full-on freakout mode," he remains calm, lets the process run its course, then tries to bring me back to reality. (I don't know if that ever happens to you, but for me it's when I've been stewing about something in my head for a little while, and then I see the coffee table filled with clutter and the laundry that hasn't been folded in 3 days, and all of a sudden I just lose it and stress out about every single little thing. Am I alone here? And don't tell me it's PMS because I don't have that anymore with chemo - OKAY?! Wait, nice things...)
Anyway, Rusty handles these things like a trooper. He doesn't complain. He loves to go to music festivals in the summer, and he hasn't been to one this year. He got his first haircut in about 10 years to support me. Some men leave their wives over stuff like this because it's too much to handle, and I can only say that this experience has actually caused us to refocus and deepen our relationship. And speaking of deepening relationships, he and my mom have spent a lot more time together. I shouldn't speak for them, but I think it has made them understand, know, and like each other better, too. Some men wouldn't be that way with their mother-in-law, but he's happy to have her with us and it means so much to me, too.
So how do you thank someone who is there for you no matter what? No one signs up for this in life. I didn't sign up for it, either, but it's different when it's happening to you. As a spouse, I can imagine that at times he must feel helpless or frustrated or lost. And those are feelings I don't have, because whether I like it or not I'm an active participant in this.
I don't mean to suggest that this surprises me. It's not like being this way is uncharacteristic of him, but it still makes my heart melt. I don't know how I could ever thank him enough for just being himself - the person who promised to be with me in sickness, but who probably didn't really expect it to happen that way.
That's about all I've got. It's a lot easier to write mean things because I think they're funny.
When I was little, my Mémère showed it to me, and it left quite an impression. If you haven't seen it, I'll give a very brief synopsis but I won't do it justice (you have to see it). It's a 1967 movie starring Sidney Poitier as a high school teacher. He is in charge of a group of ruffians, just about to graduate high school. The kids are totally disrespectful and and he soon realizes that the information they need isn't in the books they can barely read - he needs to prepare them to be adults. They start out having absolutely no respect for him, blah blah, he starts treating them like adults, blah blah, they eventually come to admire and respect him, and it's a very touching story.
There is also a song by the same name, sung by Lulu, and it's the theme song to the movie. Anyway, for some reason I keep thinking of this song, especially the line right before the refrain - "How do you thank someone..." (the rest of it, which is not relevant to my post is "who has taken you from crayons to perfume..." then "It isn't easy, but I'll try..."). I think it's quite a beautiful song.
Anyway, what the heck am I talking about? Well, my mom told me I should try writing nice things (undoubtedly in reference to my not-so-nice post a week ago), and I told her that was unrealistic ;-) Then I remembered that I did complain about not getting any blog ideas, and here she was kind of giving me an idea. So, I decided to write about a nice thing for a change. This is something I've been wanting to write about for awhile, but wasn't sure how to do it.
When this song gets stuck in my head, it's because I'm wondering how you thank someone who you feel you can never ever repay for all that they have done for you. This describes several people in my life, but for this post I want to focus on Rusty. This is not to say he's the only person who has helped me. So don't be disappointed if I didn't call you out. See? That's why I told my mom I couldn't write nice things, because then people would wonder why I didn't write nice things about them. If I write mean things, no one gets jealous or upset that I didn't write about them :-)
Anyway, the spouse tends to get lost in the shuffle of a cancer patient. I don't even know how Rusty must feel. No one ever asks him. He's there for everything. He stays home from work every time I have an appointment - even if it's just to get a bone marrow booster (essentially a 15 minute appointment the day after chemo). At first, he didn't let me lift a finger at home. Then I felt it was starting to make my muscles atrophy, so I insisted that he let me do some things around the house. And he has.
When I go to the spa to get a massage or a pedicure, Rusty is at home mowing the lawn or painting the outside of the house. When I am sitting on the couch blogging, Rusty gets me more water or whatever else I need. When he's helping me make dinner, he actually makes sure he's cutting the onions exactly the way I want him to cut them. When I am feeling really crappy, he listens to all of my symptoms and offers encouragement. When I go into what I call "full-on freakout mode," he remains calm, lets the process run its course, then tries to bring me back to reality. (I don't know if that ever happens to you, but for me it's when I've been stewing about something in my head for a little while, and then I see the coffee table filled with clutter and the laundry that hasn't been folded in 3 days, and all of a sudden I just lose it and stress out about every single little thing. Am I alone here? And don't tell me it's PMS because I don't have that anymore with chemo - OKAY?! Wait, nice things...)
Anyway, Rusty handles these things like a trooper. He doesn't complain. He loves to go to music festivals in the summer, and he hasn't been to one this year. He got his first haircut in about 10 years to support me. Some men leave their wives over stuff like this because it's too much to handle, and I can only say that this experience has actually caused us to refocus and deepen our relationship. And speaking of deepening relationships, he and my mom have spent a lot more time together. I shouldn't speak for them, but I think it has made them understand, know, and like each other better, too. Some men wouldn't be that way with their mother-in-law, but he's happy to have her with us and it means so much to me, too.
So how do you thank someone who is there for you no matter what? No one signs up for this in life. I didn't sign up for it, either, but it's different when it's happening to you. As a spouse, I can imagine that at times he must feel helpless or frustrated or lost. And those are feelings I don't have, because whether I like it or not I'm an active participant in this.
I don't mean to suggest that this surprises me. It's not like being this way is uncharacteristic of him, but it still makes my heart melt. I don't know how I could ever thank him enough for just being himself - the person who promised to be with me in sickness, but who probably didn't really expect it to happen that way.
That's about all I've got. It's a lot easier to write mean things because I think they're funny.
Tuesday, July 8, 2008
For My Sister
Awhile back, I asked people for suggestions about what to write. Although I got a few, most people didn't offer up anything, and so congratulations - what you got is my soapbox post ;-)
My sister did ask about what preventative measures those with the BRCA mutation can take to prevent cancer or a recurrence. And I ignored her. So, here's a discussion about what can be done.
First, set aside the question about whether or not to get the genetic testing. We kind of already talked about that. Instead, let's talk about the options on the table. Note that I am not an expert, and most of this is stuff I've collected from articles or websites, some from medical journals, etc. I may be wrong. Feel free to correct me.
Increased Surveillance
What it is: Getting more frequent or more aggressive diagnostics tests. This may mean getting mammograms earlier than usually recommended, getting MRI's in addition to mammograms, or increasing frequency of self-breast exams (or breast exams by a clinician).
How it works: With increased surveillance, you are hoping to catch cancer at an earlier stage. Increased surveillance does not prevent cancer, but if you do catch it sooner, theoretically you may detect it before it metastasizes or requires more aggressive treatment.
Statistics: I was unable to find any statistics on how effective this is, but it's a no-brainer. According to many guidelines, those who have the BRCA mutation should begin getting mammograms at age 25.
My opinion: Amen. If I had done this, I may have found my cancer sooner.
Prophylactic Mastectomy
What it is: Removing one or both breasts to prevent breast cancer. In this way, having both breasts removed is referred to as a prophylactic bilateral mastectomy (PBM). In some cases, a woman may choose to have the opposite breast removed after being diagnosed with cancer in one breast (this is because the chance of recurrence is higher in the other breast, presumably because it hasn't been treated) - this is referred to as a prophylactic contralateral mastectomy (PCM).
How it works: By removing breast tissue, there is less tissue where cancer can form. In the case of a prophylactic bilateral mastectomy, very little tissue remains, so the chances of getting breast cancer is very small, but it can still happen.
Statistics: According to one study, PBM reduces the risk of getting cancer for BRCA mutation carriers by about 90% after a median followup period of about 13 years.
My opinion: We'll leave that for another blog entry.
Chemoprevention
What it is: Chemoprevention refers to using drugs to prevent cancer. It does not mean receiving chemotherapy (in the traditional sense) before being diagnosed with cancer.
How it works: The most prevalent drug used for this technique is Tamoxifen, which blocks the effect of estrogen on breast tissue. It's also used to prevent recurrence in cancer survivors. BRCA1-related cancer is generally not estrogen-receptor positive, so there is disagreement in the medical community about the appropriateness of using Tamoxifen for this group.
Risks: Tamoxifen can cause serious side-affects, such as blood clots, stroke, uterine cancer, cataracts, and menopause-like symptoms.
Statistics: One study concluded that the use of Tamoxifen for BRCA2 mutation carriers reduced the incidence of cancer by about 62% (I couldn't find the followup period on this study).
My opinion: I already know I will take this drug after my other treatments, but for those who are trying to prevent cancer in the first place, I am very intrigued by this option. Normally, patients take this drug for 5 years. We asked Mr. Wizard about this, and he said that 5 years isn't a magic number. In one sense, 5 years is practical - it's often difficult to follow up with patients for loner periods. Also, they found that giving the drug for longer generally didn't result in improvements, so 5 years it is. But I wonder - are things different because I'm so young? I know my grandmother took Tamoxifen, and then discontinued after 5 years (it might have been longer, I can't remember), and then she had a recurrence. After treatment, she now refuses to stop taking the drug (I don't blame her!). But would a young, BRCA2 mutation carrier benefit from taking this for 5 years? Would that only delay cancer? What if they took it forever?
Prophylactic Oopherectomy
What it is: A risk-reducing salpino-oophorectomy (RRSO) refers to the removal of the fallopian tubes and ovaries.
How it works: The surgery will introduce a woman's body to early menopause, because the ovaries will no longer be available to produce estrogen.
Risks: Removing the ovaries increases the risk of cardiovascular disease and osteoporosis.
Statistics: New studies have shown a significant difference in the effectiveness of RRSO for those carrying the BRCA1 vs. BRCA2 mutation. The study only followed the groups for 3 years, so it doesn't help me much (being cancer-free until age 30 isn't quite good enough for me). The surgery reduced the risk of recurrence for BRCA2 carriers by 72%, which is supposedly almost double that of BRCA1 carriers. More generally, having an RRSO has been shown to reduce the risk by about 50% for BRCA1/2 mutation carriers after 3 years.
My opinion: Originally, I was really pulling for this option because I didn't really want to have children anyway. Keeping my boobs and not having children? No problem! Unfortunately, a 3 year followup period isn't enough data for me. I'm sure RRSO helps, but I don't think this is something that I can count on alone. I'm also concerned about the osteoporosis and cardiovascular disease. While this is something I am considering doing, it can't be my only defense. Also, for those who have not been diagnosed, I wouldn't consider it effective enough.
Miscellaneous
There are lots of things I've read about that can reduce breast cancer risk, but there are two that really stuck with me. One is that weight loss and eating a low-fat diet has been shown to reduce recurrence. Another is a compound found in broccoli and broccoli sprouts.
My question to you is, what kind of non-traditional things have you heard of that have been linked to a reduced risk of recurrence or initial diagnosis of cancer?
My sister did ask about what preventative measures those with the BRCA mutation can take to prevent cancer or a recurrence. And I ignored her. So, here's a discussion about what can be done.
First, set aside the question about whether or not to get the genetic testing. We kind of already talked about that. Instead, let's talk about the options on the table. Note that I am not an expert, and most of this is stuff I've collected from articles or websites, some from medical journals, etc. I may be wrong. Feel free to correct me.
Increased Surveillance
What it is: Getting more frequent or more aggressive diagnostics tests. This may mean getting mammograms earlier than usually recommended, getting MRI's in addition to mammograms, or increasing frequency of self-breast exams (or breast exams by a clinician).
How it works: With increased surveillance, you are hoping to catch cancer at an earlier stage. Increased surveillance does not prevent cancer, but if you do catch it sooner, theoretically you may detect it before it metastasizes or requires more aggressive treatment.
Statistics: I was unable to find any statistics on how effective this is, but it's a no-brainer. According to many guidelines, those who have the BRCA mutation should begin getting mammograms at age 25.
My opinion: Amen. If I had done this, I may have found my cancer sooner.
Prophylactic Mastectomy
What it is: Removing one or both breasts to prevent breast cancer. In this way, having both breasts removed is referred to as a prophylactic bilateral mastectomy (PBM). In some cases, a woman may choose to have the opposite breast removed after being diagnosed with cancer in one breast (this is because the chance of recurrence is higher in the other breast, presumably because it hasn't been treated) - this is referred to as a prophylactic contralateral mastectomy (PCM).
How it works: By removing breast tissue, there is less tissue where cancer can form. In the case of a prophylactic bilateral mastectomy, very little tissue remains, so the chances of getting breast cancer is very small, but it can still happen.
Statistics: According to one study, PBM reduces the risk of getting cancer for BRCA mutation carriers by about 90% after a median followup period of about 13 years.
My opinion: We'll leave that for another blog entry.
Chemoprevention
What it is: Chemoprevention refers to using drugs to prevent cancer. It does not mean receiving chemotherapy (in the traditional sense) before being diagnosed with cancer.
How it works: The most prevalent drug used for this technique is Tamoxifen, which blocks the effect of estrogen on breast tissue. It's also used to prevent recurrence in cancer survivors. BRCA1-related cancer is generally not estrogen-receptor positive, so there is disagreement in the medical community about the appropriateness of using Tamoxifen for this group.
Risks: Tamoxifen can cause serious side-affects, such as blood clots, stroke, uterine cancer, cataracts, and menopause-like symptoms.
Statistics: One study concluded that the use of Tamoxifen for BRCA2 mutation carriers reduced the incidence of cancer by about 62% (I couldn't find the followup period on this study).
My opinion: I already know I will take this drug after my other treatments, but for those who are trying to prevent cancer in the first place, I am very intrigued by this option. Normally, patients take this drug for 5 years. We asked Mr. Wizard about this, and he said that 5 years isn't a magic number. In one sense, 5 years is practical - it's often difficult to follow up with patients for loner periods. Also, they found that giving the drug for longer generally didn't result in improvements, so 5 years it is. But I wonder - are things different because I'm so young? I know my grandmother took Tamoxifen, and then discontinued after 5 years (it might have been longer, I can't remember), and then she had a recurrence. After treatment, she now refuses to stop taking the drug (I don't blame her!). But would a young, BRCA2 mutation carrier benefit from taking this for 5 years? Would that only delay cancer? What if they took it forever?
Prophylactic Oopherectomy
What it is: A risk-reducing salpino-oophorectomy (RRSO) refers to the removal of the fallopian tubes and ovaries.
How it works: The surgery will introduce a woman's body to early menopause, because the ovaries will no longer be available to produce estrogen.
Risks: Removing the ovaries increases the risk of cardiovascular disease and osteoporosis.
Statistics: New studies have shown a significant difference in the effectiveness of RRSO for those carrying the BRCA1 vs. BRCA2 mutation. The study only followed the groups for 3 years, so it doesn't help me much (being cancer-free until age 30 isn't quite good enough for me). The surgery reduced the risk of recurrence for BRCA2 carriers by 72%, which is supposedly almost double that of BRCA1 carriers. More generally, having an RRSO has been shown to reduce the risk by about 50% for BRCA1/2 mutation carriers after 3 years.
My opinion: Originally, I was really pulling for this option because I didn't really want to have children anyway. Keeping my boobs and not having children? No problem! Unfortunately, a 3 year followup period isn't enough data for me. I'm sure RRSO helps, but I don't think this is something that I can count on alone. I'm also concerned about the osteoporosis and cardiovascular disease. While this is something I am considering doing, it can't be my only defense. Also, for those who have not been diagnosed, I wouldn't consider it effective enough.
Miscellaneous
There are lots of things I've read about that can reduce breast cancer risk, but there are two that really stuck with me. One is that weight loss and eating a low-fat diet has been shown to reduce recurrence. Another is a compound found in broccoli and broccoli sprouts.
My question to you is, what kind of non-traditional things have you heard of that have been linked to a reduced risk of recurrence or initial diagnosis of cancer?
Monday, July 7, 2008
Dear Miss Manners...
Recently I've been diagnosed with cancer, and it seems like every whacko is using this as an opportunity to say rude and insensitive things. How can I tell them they're being mean without being mean myself?
- Pissed Off Cancer Patient
Worcester, MA
Dear Pissed Off:
There's absolutely no way to do this nicely. It's okay - you deserve some time on the proverbial soap box. Go ahead and let 'er rip, just don't tell anyone I said so.
Miss Manners
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Okay, folks. I've toyed with the idea of how exactly to tell people what NOT to say to cancer patients, because I feel like I've been a sounding board for all of these things. I nixed the idea early on because I knew I would alienate everyone who has ever said one of those things to me, and then everyone would hate me instead of feel sorry for me. As much as I don't like it when people pity me, I think I like it even less when they hate me. I think.
Then, recently, it seems like there's been a spate of articles in some of my favorite magazines and websites about what to say or, more importantly, what not to say to someone with cancer or someone who's grieving (basically, it's the same list for both people). So, I decided it might be time for me to write my own. BUT FIRST - you have to promise me that if you're reading this and you've said one of these things to me, you won't hate me or feel bad after I let loose. If there's a chance that you're not grown-up enough to let it go, then you can't keep reading. Okay? Good. Understand that (a) I like to bitch (it's what I do), and (b) if you're reading this, I probably care a lot about you, so don't hold a grudge (I won't).
Drumroll please...
1) Why aren't you going to Boston?
Very few people have said this to me, but nothing annoys me more. You are second-guessing my medical decisions, and that's not right. What makes you think you are more qualified to decide where I should be treated? Have you met my doctors? Have you reviewed my mammograms? Did you ever touch my boob? Didn't think so.
I was in the grocery store a couple of weeks back, and some woman stopped me in the bargain aisle and said, "Are you okay?"
"I'm fine." (go away, I'm thinking)
"Really?" I could see she wasn't going to give up that easy.
"Well, I'm going to be fine." Awkward pause... She didn't move. "I have stage IIB breast cancer, and my tumor is responding very well to chemotherapy." There. Go away.
"Well, I've been cancer free for 15 years now, so know that it's possible." Yeah, I know it's possible. "Where are you going, honey?"
"Worcester."
"Oh."
"It's right down the street from my house. Honestly, Boston would have to be a billion times better for me to even consider making the drive." It's true. I love my doctors and I'm at a teaching hospital, which I also love. I'm sure Boston is great, but it takes me literally 10 minutes from door to door to get to my treatment facility. It would be about an hour and a half door to door (accounting for a moderate amount of traffic) to get to Boston, and I would have to do it dozens of times over the course of my treatment. And I'm getting great care where I am!
"Well, hun, Boston is a billion times better. Mass General Hospital saved my life". At this point, she probably feared for her life once more because I was steaming. I mean, where the hell does this lady get off stopping me unsolicited in the grocery store to tell me that my doctors are inferior to the ones she had 15 years ago? I could have smacked her.
"But you're going to be fine," she quickly said.
This isn't the first time this has happened to me. So here it is... item number one... NEVER ask a cancer patient why they're not being treated at a facility that you think is superior! If you're really concerned, you may ask a leading question like "Are you happy with your doctors?" but that's it. Don't ever imply that the patient made a bad care decision if you don't know what the hell you're talking about. And don't think the patient won't notice if you try to be subtle. It's impossible.
And while we're on that topic...
2) Don't harass complete strangers. This is not the first complete stranger who has tried to give me bad advice. The first one was worse. Way worse. So bad, I promised I wouldn't blog about it, and I'm not, but it was bad.
A couple of weeks ago, Rusty and I were having ice cream and we saw an older woman who was obviously undergoing treatment for breast cancer. She had no hair, she was all decked out in pink and had pink ribbon pins everywhere. I wanted so badly to say something to her, but I bit my tongue. At that moment, I realized that when complete strangers say things to cancer patients, they're doing it because it makes themselves feel better.
I had nothing in common with this woman other than we both had probably the same toxic chemicals running through our bloodstream and the same awful disease. I just smiled at her and I helped her carry her ice cream (she had a cane and couldn't quite get it all herself). Sometimes people just want to be left alone, and it's usually when they're out in public going about their normal business. When I'm at an airport or shopping the bargain aisle or getting ice cream, don't try to talk to me about cancer.
3)
Whether that platitude comes in the form of an unqualified medical opinion like "I'm sure they caught it early", or a totally insincere "You'll be fine", or even the meaningless "I know lots of people who have beaten it", or my personal favorite "At least you're young"... it's insulting.
Similar to the drive-by cancer conversation (see 2), these statements are intended to make the speaker feel better, not the cancer patient. Many many many people have said these things to me, and it doesn't help. I know that these words come out when people are caught by surprise and they don't know what else to say, so I give them a pass. But it doesn't help - it just makes the cancer patient feel like their problem is insignificant or not worthy of a more personal statement.
What if they didn't catch it early? What if I won't be fine? I know other people have beaten it, but that doesn't make me feel better. And being young has a negative effect on survival statistics, believe it or not.
If you are ever in this situation, take a deep breath, and say something true and meaningful. "I can't imagine how this must feel", or "I'm so sorry" always works.
4) Let me know what I can do to help.
I struggled with this one, and Rusty (reading over my shoulder) didn't want me to write it. When I read this in one of the articles I spoke about earlier, I decided it was okay to include my take. Please don't be offended, because lots of people have said this to me and I know they meant it when they said it.
But it's true. I will never tell you what you can do to help. If you know me, you know I'm a stubborn pain in the ass. It's totally okay to ask what you can do to help, don't be surprised if you don't walk away with an answer.
One article I read said it pretty well: "Offer practical and specific support. Don’t say, 'Is there anything I can do?' or 'Call me if you need me.' Decide what you can do, and then do it." But I have an addendum: "Make sure your support is actually what the person wants and needs."
Understand that sometimes what you may want to do to help is not the thing the person needs at that time - so be careful and understand if they don't want help (remember, I'm a stubborn pain in the ass).
For example, one friend made us a frozen lasagna that we put in the oven a week later when we didn't have the time or the energy to cook. That was great. On the other hand, one of my old clients asked if she could come over and cook us a meal. Suddenly a good intention turns into me frantically cleaning my house and trying to be home in time for someone to cook me a meal that I would have preferred to cook myself under a lot less stress.
Okay, I'm off the soapbox now. I did release a bit of my inner bitch, but I really felt like I had to get some of those things out. And this is what you get for not giving me ideas for what to write about ;-) (not you, Jocelyn)
I do appreciate the warm thoughts, well wishes, and kind words that everyone has sent my way. And if I've alienated you when all you wanted to do is help, know that I'm doing okay and I'm sorry. Rusty and I enjoy being self-sufficient and doing things at our own pace, but I have no idea what I'll need after surgery. Hmm... windows washed, garden weeded, laundry folded, toilet scrubbed... just kidding. :-)
- Pissed Off Cancer Patient
Worcester, MA
Dear Pissed Off:
There's absolutely no way to do this nicely. It's okay - you deserve some time on the proverbial soap box. Go ahead and let 'er rip, just don't tell anyone I said so.
Miss Manners
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Okay, folks. I've toyed with the idea of how exactly to tell people what NOT to say to cancer patients, because I feel like I've been a sounding board for all of these things. I nixed the idea early on because I knew I would alienate everyone who has ever said one of those things to me, and then everyone would hate me instead of feel sorry for me. As much as I don't like it when people pity me, I think I like it even less when they hate me. I think.
Then, recently, it seems like there's been a spate of articles in some of my favorite magazines and websites about what to say or, more importantly, what not to say to someone with cancer or someone who's grieving (basically, it's the same list for both people). So, I decided it might be time for me to write my own. BUT FIRST - you have to promise me that if you're reading this and you've said one of these things to me, you won't hate me or feel bad after I let loose. If there's a chance that you're not grown-up enough to let it go, then you can't keep reading. Okay? Good. Understand that (a) I like to bitch (it's what I do), and (b) if you're reading this, I probably care a lot about you, so don't hold a grudge (I won't).
Drumroll please...
1) Why aren't you going to Boston?
Very few people have said this to me, but nothing annoys me more. You are second-guessing my medical decisions, and that's not right. What makes you think you are more qualified to decide where I should be treated? Have you met my doctors? Have you reviewed my mammograms? Did you ever touch my boob? Didn't think so.
I was in the grocery store a couple of weeks back, and some woman stopped me in the bargain aisle and said, "Are you okay?"
"I'm fine." (go away, I'm thinking)
"Really?" I could see she wasn't going to give up that easy.
"Well, I'm going to be fine." Awkward pause... She didn't move. "I have stage IIB breast cancer, and my tumor is responding very well to chemotherapy." There. Go away.
"Well, I've been cancer free for 15 years now, so know that it's possible." Yeah, I know it's possible. "Where are you going, honey?"
"Worcester."
"Oh."
"It's right down the street from my house. Honestly, Boston would have to be a billion times better for me to even consider making the drive." It's true. I love my doctors and I'm at a teaching hospital, which I also love. I'm sure Boston is great, but it takes me literally 10 minutes from door to door to get to my treatment facility. It would be about an hour and a half door to door (accounting for a moderate amount of traffic) to get to Boston, and I would have to do it dozens of times over the course of my treatment. And I'm getting great care where I am!
"Well, hun, Boston is a billion times better. Mass General Hospital saved my life". At this point, she probably feared for her life once more because I was steaming. I mean, where the hell does this lady get off stopping me unsolicited in the grocery store to tell me that my doctors are inferior to the ones she had 15 years ago? I could have smacked her.
"But you're going to be fine," she quickly said.
This isn't the first time this has happened to me. So here it is... item number one... NEVER ask a cancer patient why they're not being treated at a facility that you think is superior! If you're really concerned, you may ask a leading question like "Are you happy with your doctors?" but that's it. Don't ever imply that the patient made a bad care decision if you don't know what the hell you're talking about. And don't think the patient won't notice if you try to be subtle. It's impossible.
And while we're on that topic...
2) Don't harass complete strangers. This is not the first complete stranger who has tried to give me bad advice. The first one was worse. Way worse. So bad, I promised I wouldn't blog about it, and I'm not, but it was bad.
A couple of weeks ago, Rusty and I were having ice cream and we saw an older woman who was obviously undergoing treatment for breast cancer. She had no hair, she was all decked out in pink and had pink ribbon pins everywhere. I wanted so badly to say something to her, but I bit my tongue. At that moment, I realized that when complete strangers say things to cancer patients, they're doing it because it makes themselves feel better.
I had nothing in common with this woman other than we both had probably the same toxic chemicals running through our bloodstream and the same awful disease. I just smiled at her and I helped her carry her ice cream (she had a cane and couldn't quite get it all herself). Sometimes people just want to be left alone, and it's usually when they're out in public going about their normal business. When I'm at an airport or shopping the bargain aisle or getting ice cream, don't try to talk to me about cancer.
3)
Whether that platitude comes in the form of an unqualified medical opinion like "I'm sure they caught it early", or a totally insincere "You'll be fine", or even the meaningless "I know lots of people who have beaten it", or my personal favorite "At least you're young"... it's insulting.
Similar to the drive-by cancer conversation (see 2), these statements are intended to make the speaker feel better, not the cancer patient. Many many many people have said these things to me, and it doesn't help. I know that these words come out when people are caught by surprise and they don't know what else to say, so I give them a pass. But it doesn't help - it just makes the cancer patient feel like their problem is insignificant or not worthy of a more personal statement.
What if they didn't catch it early? What if I won't be fine? I know other people have beaten it, but that doesn't make me feel better. And being young has a negative effect on survival statistics, believe it or not.
If you are ever in this situation, take a deep breath, and say something true and meaningful. "I can't imagine how this must feel", or "I'm so sorry" always works.
4) Let me know what I can do to help.
I struggled with this one, and Rusty (reading over my shoulder) didn't want me to write it. When I read this in one of the articles I spoke about earlier, I decided it was okay to include my take. Please don't be offended, because lots of people have said this to me and I know they meant it when they said it.
But it's true. I will never tell you what you can do to help. If you know me, you know I'm a stubborn pain in the ass. It's totally okay to ask what you can do to help, don't be surprised if you don't walk away with an answer.
One article I read said it pretty well: "Offer practical and specific support. Don’t say, 'Is there anything I can do?' or 'Call me if you need me.' Decide what you can do, and then do it." But I have an addendum: "Make sure your support is actually what the person wants and needs."
Understand that sometimes what you may want to do to help is not the thing the person needs at that time - so be careful and understand if they don't want help (remember, I'm a stubborn pain in the ass).
For example, one friend made us a frozen lasagna that we put in the oven a week later when we didn't have the time or the energy to cook. That was great. On the other hand, one of my old clients asked if she could come over and cook us a meal. Suddenly a good intention turns into me frantically cleaning my house and trying to be home in time for someone to cook me a meal that I would have preferred to cook myself under a lot less stress.
Okay, I'm off the soapbox now. I did release a bit of my inner bitch, but I really felt like I had to get some of those things out. And this is what you get for not giving me ideas for what to write about ;-) (not you, Jocelyn)
I do appreciate the warm thoughts, well wishes, and kind words that everyone has sent my way. And if I've alienated you when all you wanted to do is help, know that I'm doing okay and I'm sorry. Rusty and I enjoy being self-sufficient and doing things at our own pace, but I have no idea what I'll need after surgery. Hmm... windows washed, garden weeded, laundry folded, toilet scrubbed... just kidding. :-)
Sunday, July 6, 2008
The Way Life Should Be
This weekend we went to Rusty's parent's summer home in Maine. Ah, Maine. When you cross into the border, the welcome sign says "Maine, The Way Life Should Be". I agree completely :-)
The summer home is in the woods on a small lake about a half hour northwest of Portland, about a three hour drive from Worcester. Whenever we go there, it's guaranteed to be a relaxing weekend full of good food, good beer, quality family time, a little bit of work, and lots of fresh air (but hopefully not too many mosquitoes).
We leisurely made our way up to Maine on Friday and got there in the late afternoon. We had a delicious supper (and just a little bit of wine) and yummy local strawberries and chocolate for dessert (and just a little bit of Kava, which is Spanish sparkling wine). Rusty's brother, Bob, and his wife, Laura, brought some "sparklers" to have a little homegrown fireworks display. While we set off ours, the other neighbors on the lake were displaying their fireworks (which were a little more than sparklers, I'd say - I think one guy spent his whole month's paycheck on his fireworks.). It was a lot of fun, and quite a pleasing and flagrant disregard for the local law.
The next day, Rusty and I went for a boat ride on the lake. It started out as a motorboat ride, but despite our best efforts, we couldn't start the motor. So, we took the rowboat instead and Rusty got a bit more of a workout than he originally intended. We also went swimming, which was my first time swimming with a bald head. It didn't feel as weird as I thought it would, but was pretty cold. While trying to get the gumption to dunk in the water, I decided having my boobs removed has one good side-effect (albeit unintended) - no more cold nipples :-)
After our swim, we relaxed on the beach a little, and then made our way back to the house for beer (just a little) with Rusty's aunt and uncle, who were over for dinner. After dinner, the four of us "kids" drove to see the official fireworks display for the town of Limington. Somehow, we forgot that the place we selected to watch from last time was probably the single worst spot (a large tree was directly in view of the display) so we camped out there again this year. After an hour and a half wait, the fireworks began. It was nice, but I liked the unsanctioned lakeside fireworks better. Also, it probably had a little something to do with waiting an hour and a half for a 20 minute show. The anticipation was just a bit too much. I'm glad we went, though - I like fireworks.
That's pretty much it - there was a lot more eating and relaxing and just enjoying each others' company, but you get the idea. I neglected to take pictures (bad blogger), except for one. This is for the beer, the wine, and the Kava. :-)
I also have a few pictures from the wedding last weekend. Thanks Kelly and Melissa!
This is of me and Sarah, my best friend. I can't believe there hasn't been a picture of her, yet. I took this picture of us in the limo on the way to the church. My sister had just called to say hello (I informed her that I was a bit busy...) so I took a picture of us to send to her.
Mom says the wig makes me look like Princess Diana.
This next picture is of Sarah, Sara (one of Vicki's friends from college) and me:
And here is me and Melissa. Can you tell how tired I am here? I've mentioned Melissa before, she's my friend from college who is currently in med school. And she is hoping to specialize in dermatology, not plastic surgery (which is what I kept saying). However, I think she should give this careful consideration because she did a wonderful job taking out the wrinkles in the photo below:
Did I say wrinkles? I didn't mean that. I meant to say she made my boobs look huge. :-)
The summer home is in the woods on a small lake about a half hour northwest of Portland, about a three hour drive from Worcester. Whenever we go there, it's guaranteed to be a relaxing weekend full of good food, good beer, quality family time, a little bit of work, and lots of fresh air (but hopefully not too many mosquitoes).
We leisurely made our way up to Maine on Friday and got there in the late afternoon. We had a delicious supper (and just a little bit of wine) and yummy local strawberries and chocolate for dessert (and just a little bit of Kava, which is Spanish sparkling wine). Rusty's brother, Bob, and his wife, Laura, brought some "sparklers" to have a little homegrown fireworks display. While we set off ours, the other neighbors on the lake were displaying their fireworks (which were a little more than sparklers, I'd say - I think one guy spent his whole month's paycheck on his fireworks.). It was a lot of fun, and quite a pleasing and flagrant disregard for the local law.
The next day, Rusty and I went for a boat ride on the lake. It started out as a motorboat ride, but despite our best efforts, we couldn't start the motor. So, we took the rowboat instead and Rusty got a bit more of a workout than he originally intended. We also went swimming, which was my first time swimming with a bald head. It didn't feel as weird as I thought it would, but was pretty cold. While trying to get the gumption to dunk in the water, I decided having my boobs removed has one good side-effect (albeit unintended) - no more cold nipples :-)
After our swim, we relaxed on the beach a little, and then made our way back to the house for beer (just a little) with Rusty's aunt and uncle, who were over for dinner. After dinner, the four of us "kids" drove to see the official fireworks display for the town of Limington. Somehow, we forgot that the place we selected to watch from last time was probably the single worst spot (a large tree was directly in view of the display) so we camped out there again this year. After an hour and a half wait, the fireworks began. It was nice, but I liked the unsanctioned lakeside fireworks better. Also, it probably had a little something to do with waiting an hour and a half for a 20 minute show. The anticipation was just a bit too much. I'm glad we went, though - I like fireworks.
That's pretty much it - there was a lot more eating and relaxing and just enjoying each others' company, but you get the idea. I neglected to take pictures (bad blogger), except for one. This is for the beer, the wine, and the Kava. :-)
I also have a few pictures from the wedding last weekend. Thanks Kelly and Melissa!
This is of me and Sarah, my best friend. I can't believe there hasn't been a picture of her, yet. I took this picture of us in the limo on the way to the church. My sister had just called to say hello (I informed her that I was a bit busy...) so I took a picture of us to send to her.
Mom says the wig makes me look like Princess Diana.This next picture is of Sarah, Sara (one of Vicki's friends from college) and me:
And here is me and Melissa. Can you tell how tired I am here? I've mentioned Melissa before, she's my friend from college who is currently in med school. And she is hoping to specialize in dermatology, not plastic surgery (which is what I kept saying). However, I think she should give this careful consideration because she did a wonderful job taking out the wrinkles in the photo below:
Did I say wrinkles? I didn't mean that. I meant to say she made my boobs look huge. :-)
Tuesday, July 1, 2008
Hiatus
Alright, alright. I've had enough of you politely harass me about my blog not being updated... I decided the best way to handle this was to just write a new post. Jocelyn says that I have gone the way of all other bloggers, dropping off the face of the blog-o-sphere.
This past weekend I was in Vicki's wedding. It was great - it was beautiful, fun, enjoyable, all that good stuff. But most importantly (ha ha), my wig was awesome. I borrowed a wig from the American Cancer Society resource center at the place where I get chemo. People donate their wigs when they don't need them anymore, so it's like a "lending library" for wigs. I wasn't interested in buying a wig (I don't care whether or not my insurance company pays for it - I have a hard time getting something like that to use just once).
To me, not wearing a wig is a sign of strength. I think it's strange when I see patients getting chemo and wearing a wig. Lets face it - you're not fooling anyone! And guess what? Most of us don't have hair, either! To each her own, but I can tell you from firsthand experience that getting a wig is not physically comfortable... but it can be emotionally comfortable. I know that since Vicki is a good friend, she would have been okay with me wearing a headscarf to her wedding (in fact, she told me she wouldn't mind if I sat in the pew in jeans if it meant I could be there - I almost wish I took her up on that at several points during the day :-). But I think that being a good friend means not asking her to be okay with me going in a headscarf. I'll be bald for another few months. She'll have these pictures of the most important day in her life forever.
As it turns out, I'm happy I had a wig. There were dozens of people I'd never met before, and they would have all been staring at me, or whatever. The wedding was beautiful, everyone had a great time, and I was part of it.
But, I'll tell you, I don't know if I'll ever wear the wig again :-)
I'm trying to get pictures of me in the wig at the wedding, but I don't have any, yet. Stay tuned...
p.s. Today was my next round of Taxol. Though I'm tired and a bit loopy, I feel fine.
This past weekend I was in Vicki's wedding. It was great - it was beautiful, fun, enjoyable, all that good stuff. But most importantly (ha ha), my wig was awesome. I borrowed a wig from the American Cancer Society resource center at the place where I get chemo. People donate their wigs when they don't need them anymore, so it's like a "lending library" for wigs. I wasn't interested in buying a wig (I don't care whether or not my insurance company pays for it - I have a hard time getting something like that to use just once).
To me, not wearing a wig is a sign of strength. I think it's strange when I see patients getting chemo and wearing a wig. Lets face it - you're not fooling anyone! And guess what? Most of us don't have hair, either! To each her own, but I can tell you from firsthand experience that getting a wig is not physically comfortable... but it can be emotionally comfortable. I know that since Vicki is a good friend, she would have been okay with me wearing a headscarf to her wedding (in fact, she told me she wouldn't mind if I sat in the pew in jeans if it meant I could be there - I almost wish I took her up on that at several points during the day :-). But I think that being a good friend means not asking her to be okay with me going in a headscarf. I'll be bald for another few months. She'll have these pictures of the most important day in her life forever.
As it turns out, I'm happy I had a wig. There were dozens of people I'd never met before, and they would have all been staring at me, or whatever. The wedding was beautiful, everyone had a great time, and I was part of it.
But, I'll tell you, I don't know if I'll ever wear the wig again :-)
I'm trying to get pictures of me in the wig at the wedding, but I don't have any, yet. Stay tuned...
p.s. Today was my next round of Taxol. Though I'm tired and a bit loopy, I feel fine.
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