So I had my first chemo cocktail mixed yesterday, with an entourage in tow so big multiple hospital employees mentioned that I must be the most popular person on the floor. I gave the credit to the cupcakes (Thanks, Rush!) And thanks Mom, Nathan, Blanca, Caro, and Kyra. Next time we'll have to actually play games instead of eating and reading Kanye's twitter the whole time.
All told, it was pretty uneventful. Having lots of people there definitely helped take the edge off, and the actual infusion itself wasn't too bad. I did get what felt like a really bad sinus infection towards the end of the Cytoxan drip, but besides that, it was ok, and it went away after they gave me some Tylenol.
After chemo, we went to two different wig places to look at wigs, and by the end of the second place, I was definitely too tired to keep going. Actually, I'm not really even sure which wigs I liked because I was so tired I couldn't really make a decision. I came home around 530 and slept until 830 or so, when I woke up and Nathan made me some pumpkin ravioli with veggies and set out strawberries. Unfortunately, something about the pumpkin ravioli just set off some icky feeling in me, but the strawberries were fantastic - exactly what I wanted. We watched some of a movie, but I got really tired around 10 or so, so I fell onto my bed and didn't wake up until 10 or 11 this morning.
Fortunately, today I felt pretty good. I got up, went to the hospital with my Mom for my Neulasta shot, and got some IV fluids. Neulasta is supposed to force my body to produce extra white blood cells to replace the ones I'm losing in chemo, but it also causes bone and muscle aches, so hopefully Tylenol can knock that out.
I'm going out to dinner tonight with the girls - I think I'll be careful about what I eat, but so far I feel not so bad! Though I guess sixteen hours of sleep will do that!
Saturday, July 31, 2010
Tuesday, July 27, 2010
Who Can't Wait for Chemo?! PICK ME! PICK ME!
So I imagine this must sound kind of weird, but I totally cannot wait for chemo to just start already. I am sick of worrying about what being really sick and gross will feel like and what being bald and fat will look like, and instead just want to already be sick and gross and bald and fat already. Once things happen, whatever they are, I can deal with them, but it's way harder to deal with nebulous bad things that haven't happened yet.
Plus, the sooner I get this done, the sooner it's over, and the sooner it's over, the sooner my hair is three inches long and ready for me to spend more than the average person's yearly salary in many countries on hair extensions.
Oh, and wig shopping is on Friday at 5 after first chemo, if anyone else wants to join the party and play dress up!
Plus, the sooner I get this done, the sooner it's over, and the sooner it's over, the sooner my hair is three inches long and ready for me to spend more than the average person's yearly salary in many countries on hair extensions.
Oh, and wig shopping is on Friday at 5 after first chemo, if anyone else wants to join the party and play dress up!
Friday, July 23, 2010
How You Can Help
Dear family, friends, and loyal blog readers from all over (especially you dedicated people in Germany and Hong Kong. Seriously, how did you even find this blog?),
You have all been great. I can hardly ask for better people in my life. Now I'm going to ask you guys for some more stuff, both because cancer allows you to be a little selfish and because unfortunately, chemo is going to be harder than surgery was. So here goes, and I promise that if you ever get a big illness one day (or a big papercut, whatever), I will do the same for you.
Please be nice to me.
Please give me lots of leeway with things like etiquette and manners. If you've sent me something lovely in the mail or over the interwebs, rest assured that I got it and I love it and I will absolutely call you back or write you a fancy thank you note at some point, but right now I am trying to wrap my mind around the idea that I am going to be bald because bald is (supposedly) better than dead.
I am going to be really tired, so I probably won't be out with you on Saturday night partying it up. However, it's nice to see you. Maybe we can get brunch on Sunday, kind of like you would do with your Grandma if she were in town. Pretend I'm like your Grandma for a few months and swing by to see me sometime - it'll break up the monotony of all those Matlock reruns I'll be watching on VHS.
If you've got a random Friday off work anytime in the next four months and have always wondered what a chemo suite looks like (they're actually super nice), come with me to chemo. I have to sit there for a few hours, and it's lame to do it by yourself. We'll have a chemo party. Honestly, I usually like to pretend that I can do this all myself and that I don't need anything from you, but I'm lying. If I go to doctor's appointments without someone else there to make me laugh, I start crying and its embarrassing. So come to chemo - we'll eat snacks and watch movies and make bald jokes. I'm not going to ask you personally as part of my "I can do everything alone" campaign, so if you're not busy just offer.
I'm sure there will be lots of other things that I think of or realize I'm not up to doing as things go on, but for now thats about all I've got.
You have all been great. I can hardly ask for better people in my life. Now I'm going to ask you guys for some more stuff, both because cancer allows you to be a little selfish and because unfortunately, chemo is going to be harder than surgery was. So here goes, and I promise that if you ever get a big illness one day (or a big papercut, whatever), I will do the same for you.
Please be nice to me.
Please give me lots of leeway with things like etiquette and manners. If you've sent me something lovely in the mail or over the interwebs, rest assured that I got it and I love it and I will absolutely call you back or write you a fancy thank you note at some point, but right now I am trying to wrap my mind around the idea that I am going to be bald because bald is (supposedly) better than dead.
I am going to be really tired, so I probably won't be out with you on Saturday night partying it up. However, it's nice to see you. Maybe we can get brunch on Sunday, kind of like you would do with your Grandma if she were in town. Pretend I'm like your Grandma for a few months and swing by to see me sometime - it'll break up the monotony of all those Matlock reruns I'll be watching on VHS.
If you've got a random Friday off work anytime in the next four months and have always wondered what a chemo suite looks like (they're actually super nice), come with me to chemo. I have to sit there for a few hours, and it's lame to do it by yourself. We'll have a chemo party. Honestly, I usually like to pretend that I can do this all myself and that I don't need anything from you, but I'm lying. If I go to doctor's appointments without someone else there to make me laugh, I start crying and its embarrassing. So come to chemo - we'll eat snacks and watch movies and make bald jokes. I'm not going to ask you personally as part of my "I can do everything alone" campaign, so if you're not busy just offer.
I'm sure there will be lots of other things that I think of or realize I'm not up to doing as things go on, but for now thats about all I've got.
Just Kidding (Chemotherapeutic News Part II)
I got my OncoType score back yesterday, which was a whopping 29. An OncoType score gives you an idea of what your chances of recurrence are within ten years, and how much chemotherapy would help you. Anything over 30 is considered "high risk." So since I am almost "high risk," (my actual risk of recurrence would be 20% without chemo), my oncologist is recommending a much more aggressive form of chemo. She also ran it by the oncologist weekly meeting at Sloan K and had them all vote on it, and the 20 of them unanimously agreed.
Since it's hard to argue with 20 of the best oncologists in country, I'll be doing the AC/T form of chemo, starting on July 30th. I'll be getting the "dose dense" form, which means that I'll be getting it every two weeks instead of every three so that body has less time to recover and we can mess me up as much as possible. If I manage to hang onto enough blood cells that we can keep assaulting my body at this rate, I'll be done with chemo in four months, and not feeling like a slug about two more months after that.
If you have any questions on AC/T, allow me to point you to the following link:
http://lmgtfy.com/?q=ACT+chemotherapy
The Cliff's Notes version:
I am going to bald, tired, sick, and really crabby for the next four to six months.
Since it's hard to argue with 20 of the best oncologists in country, I'll be doing the AC/T form of chemo, starting on July 30th. I'll be getting the "dose dense" form, which means that I'll be getting it every two weeks instead of every three so that body has less time to recover and we can mess me up as much as possible. If I manage to hang onto enough blood cells that we can keep assaulting my body at this rate, I'll be done with chemo in four months, and not feeling like a slug about two more months after that.
If you have any questions on AC/T, allow me to point you to the following link:
http://lmgtfy.com/?q=ACT+chemotherapy
The Cliff's Notes version:
I am going to bald, tired, sick, and really crabby for the next four to six months.
Tuesday, July 20, 2010
Chemotherapeutic News
I went back to work yesterday, and I'm glad to have some "normal" back in my life.
I also went to see my oncologist (Dr. Maria Theodoulou) on Thursday, and we talked about chemo. Right now, we are waiting for my OncoType test results to come back, but either way we are probably going the chemo route just to make sure this cancer thing is blasted out of me as best we can. My options for chemo right now are two: a three month-long course of chemo with worse side effects (including the baldness), or a six month-long course with easier side effects (including not losing a noticable amount of my hair).
Right now, I'm leaning towards the six month option, but I need to use my Google MD to do some more research on the specific drugs used. I know it's a longer course, but the way I figure it, not having hair would affect me for at least two years (about how long it takes to get back to below chin-length), and I'd much prefer to not allow a few tiny faulty cells to control my entire appearance through the rest of my mid-twenties. Plus, I bet the extra three months are much easier to deal with if you don't have to be "the bald cancer girl" every day.
I also went to see my oncologist (Dr. Maria Theodoulou) on Thursday, and we talked about chemo. Right now, we are waiting for my OncoType test results to come back, but either way we are probably going the chemo route just to make sure this cancer thing is blasted out of me as best we can. My options for chemo right now are two: a three month-long course of chemo with worse side effects (including the baldness), or a six month-long course with easier side effects (including not losing a noticable amount of my hair).
Right now, I'm leaning towards the six month option, but I need to use my Google MD to do some more research on the specific drugs used. I know it's a longer course, but the way I figure it, not having hair would affect me for at least two years (about how long it takes to get back to below chin-length), and I'd much prefer to not allow a few tiny faulty cells to control my entire appearance through the rest of my mid-twenties. Plus, I bet the extra three months are much easier to deal with if you don't have to be "the bald cancer girl" every day.
Wednesday, July 14, 2010
Friends and Foobs
I'm writing this from the uber-luxurious Sloan Kettering "plastics" waiting room, which is tricked out with a foamy cappucino machine, lots of snacks, magazines, and internet-capable computers. Cancer is so much better if you can read celebrity gossip websites at the same time, no?
This morning I had a "breast reconstruction class," which basically just told me a bunch of stuff I already know about breast reconstruction. I'm glad I went though, because I met someone else in her mid-20s going through the same thing! She's only a month behind me in her diagnosis, and is figuring out surgery options and getting her BRCA results back soon. It's great to meet someone my age who's in the same place. Not that you guys haven't been more helpful and supportive than I could have possibly hoped for, but it would be lame to just dump everything on you. Also, empathy and commiseration are two different coping tools, I think (though both are helpful!).
Because I was already uptown, I moved my puberty appointment from tomorrow to today, which is nice because I don't have to get up early tomorrow for a foob fill. Also, since I'm meeting with the oncologist tomorow, I'm glad I don't have to do two doctor appointments in one day.
Fun news - though Project Fertili-save made me gain ten pounds in like, two weeks, I have magically lost five pounds in two days. They weren't kidding when they said it just totally disappears. PHEW!
Oh, and for those of you who may be wondering how the stomach-bleedy thing is going, I'll say this: Percocet is an amazing drug. Off it, it's worse than having eaten six month old fish out of a garbage can (not that I've done that, but I'm assuming). On it, I'm a litle loopy, but everything is awesome.
This morning I had a "breast reconstruction class," which basically just told me a bunch of stuff I already know about breast reconstruction. I'm glad I went though, because I met someone else in her mid-20s going through the same thing! She's only a month behind me in her diagnosis, and is figuring out surgery options and getting her BRCA results back soon. It's great to meet someone my age who's in the same place. Not that you guys haven't been more helpful and supportive than I could have possibly hoped for, but it would be lame to just dump everything on you. Also, empathy and commiseration are two different coping tools, I think (though both are helpful!).
Because I was already uptown, I moved my puberty appointment from tomorrow to today, which is nice because I don't have to get up early tomorrow for a foob fill. Also, since I'm meeting with the oncologist tomorow, I'm glad I don't have to do two doctor appointments in one day.
Fun news - though Project Fertili-save made me gain ten pounds in like, two weeks, I have magically lost five pounds in two days. They weren't kidding when they said it just totally disappears. PHEW!
Oh, and for those of you who may be wondering how the stomach-bleedy thing is going, I'll say this: Percocet is an amazing drug. Off it, it's worse than having eaten six month old fish out of a garbage can (not that I've done that, but I'm assuming). On it, I'm a litle loopy, but everything is awesome.
Monday, July 12, 2010
Because Un-Fun News Is Still News
I had to go back to Fertili-doctors today, because apparently I now have blood in my belly which is making me super unhappy. It's not dangerous and apparently just resolves on its own, but I will be spending the next eight days or so curled up in a ball and hopped up on percocet. Apparently I am supposed to be drinking lots of Smartwater and Gatorade, so feel free to bring some by. I also hear that both go particularly well with cupcakes.
Sunday, July 11, 2010
Mission Accomplished
Project Fertili-save wrapped up this morning, with great success. As soon as I don't feel like I've been punched in the stomach any more, I'm sure I'll be stoked about the number of eggsicles I've got on ice.
More excitingly, I no longer have to get up at 8am for blood tests, so I can finally take full advantage of my cancercation by sleeping until noon every day!
More excitingly, I no longer have to get up at 8am for blood tests, so I can finally take full advantage of my cancercation by sleeping until noon every day!
Thursday, July 8, 2010
Apparently, They Come in Threes
Tomorrow I have three doctors appointments - one before 9 for Project Fertili-save, one at ten for a foob fill, and one at 11 to sign some consent forms for a test they want to do to my lump (which, by the way, they are storing in a wax block at the hospital. Cool and creepy, no?).
My Project Fertili-save appointments are actually way worse than cancer-related appointments, because if its even possible, I am even more out of place there than at a breast cancer doctor. Everyone there totally want babies. I still mostly think babies are icky and unsanitary. The first time I went there for a blood test, I didnt even know what I was supposed to be doing when I got there. The nurse asked what I was there for, and with everyone in the room leaning in to hear why the single girl in her mid-20s is at the fertility doctor, I started to cry and told her I had no idea.
After that, I have a puberty appointment at the reconstructive surgeon, at which my foobs will magically grow right in front of my eyes. After that, I have to go authorize OncoType testing on my lump, which will give the doctors an idea of how effective chemo would be. Unfortunately, all these tests have been tested and proven on people significantly older than I am, so the results have a little less predictive value. But we do them anyway, since those are the tests that exist.
So thats my day - dont say Im not keeping you in the loop!
Oh, and an aside - I met with my surgeon, Dr. Tari King, on Tuesday. She said everything seems to be healing up well, and she gave me the final pathology of my tumoriffic lump. Nothing new there, but what I did think was interesting was that on the same side, the lab also found an instance of DCIS (Ductal Carcinoma in Situ), which is less advanced, but still cancerous nonetheless. Had I not had the mastectomy, we would not have found it. It completely reaffirmed my decision that I went the right route with my surgical decision, since had it not been this lump, it eventually would have just been another one.
My Project Fertili-save appointments are actually way worse than cancer-related appointments, because if its even possible, I am even more out of place there than at a breast cancer doctor. Everyone there totally want babies. I still mostly think babies are icky and unsanitary. The first time I went there for a blood test, I didnt even know what I was supposed to be doing when I got there. The nurse asked what I was there for, and with everyone in the room leaning in to hear why the single girl in her mid-20s is at the fertility doctor, I started to cry and told her I had no idea.
After that, I have a puberty appointment at the reconstructive surgeon, at which my foobs will magically grow right in front of my eyes. After that, I have to go authorize OncoType testing on my lump, which will give the doctors an idea of how effective chemo would be. Unfortunately, all these tests have been tested and proven on people significantly older than I am, so the results have a little less predictive value. But we do them anyway, since those are the tests that exist.
So thats my day - dont say Im not keeping you in the loop!
Oh, and an aside - I met with my surgeon, Dr. Tari King, on Tuesday. She said everything seems to be healing up well, and she gave me the final pathology of my tumoriffic lump. Nothing new there, but what I did think was interesting was that on the same side, the lab also found an instance of DCIS (Ductal Carcinoma in Situ), which is less advanced, but still cancerous nonetheless. Had I not had the mastectomy, we would not have found it. It completely reaffirmed my decision that I went the right route with my surgical decision, since had it not been this lump, it eventually would have just been another one.
Saturday, July 3, 2010
Caitlin Had Cancer
Hi blogfriends! I am writing from the comfort of my very own NYC apartment, because I am finally back at home after my surgery. I stayed with my parents for a week, which was great for recovering without having to worry about anything. However, now I'm ready to take on some huge life challenges all on my own. Yes, that's right, I am going to take a shower.
As was reported by my excellent guest blogger, my surgery went well, and I spent the next few days feeling loopy-good-loopy. Since going home from the hospital on Sunday, it's been a bit of a runaround. I think I've been to see a doctor every single day since my surgery for various reasons, both scheduled and unscheduled. First, I had a teeny bleedy problem (PROTIP: A IGNORE THE WELL MEANING ADVICE OF THE ONCALL RESIDENT DOCTORS. ADVIL WILL MAKE YOU BLEED.), but then it was smooth sailing the whole way out. I got the surgical drains out on Thursday, which is super because apparently some people have to wear them for up to three weeks. They also expanded my foobs, which is a fun process. The tissue expanders have small metal ports that allow them too be pumped up at regular intervals. The doctor dangles a magnet over the area to find the port, and whereever it attaches to my skin is where they inject the stretching saline. I know, cool and icky at the same time, right?. It doesn't hurt during, because I don't have any nerve endings right now, but it hurts for a day or two after, since the point is to stretch the skin and muscle around the area to make room for implants. (Yup, I'm going to officially be That Girl Who Got Breast Implants.)
Project Fertili-Save is going well, though making me grumpy and emotional over weird things(this is all the apology you're going to get if I randomly start crying when you ask me where the peanut butter is and I don't know, so cherish away). Hopefully that should all be over next week.
After a thorough slice and dice of my lymph nodes, they discovered that all the ones they took out are completely cancer free (YAY!) which means it would be extremely unlikely that there are any cancerous cells camping out anywhere else in my body. YAY! WIN FOR THE LYMPHATIC SYSTEM!
And now, the biggest news, which I didn't even actually realize until a few days after surgery. I don't have cancer anymore. They cut it out and took it away. I may feel sort of stiff and grumpy and tired right now, but I just got rid of cancer. I probably had it in college, I definitely had it when I was riding camels in Egypt, and I had it every weekend I got dressed and went out with my friends. And now I don't have it anymore. Just like that! I felt pretty awesome and healthy before this, and if that was WITH cancer, I can't imagine how healthy and awesome I'll be once I'm all recovered. In the meantime though, I'm watching a TON of movies.
P.S. -- THANK YOU in a HUGE way to everybody who came to see me in the hospital, or sent flowers or cards or showed up at my door with an enormous Clueless-themed gift basket. Thanks for your gifts and your emails and your awesome music mixes. Thanks for your phone calls. And most importantly, thanks for not telling me that I smelled funny (not being able to shower for a week is a unique kind of torture). This surgery was one of the harder things I've ever done, and you guys made it such a positive, warm, love-filled experience that I've actually been referring to it as Cancer Christmas.
I have a follow-up with my surgeon on Tuesday, and then I'll be meeting with an oncologist to discuss chemo options. I'll be sure to keep you guys abreast (teehee) of things as they develop.
As was reported by my excellent guest blogger, my surgery went well, and I spent the next few days feeling loopy-good-loopy. Since going home from the hospital on Sunday, it's been a bit of a runaround. I think I've been to see a doctor every single day since my surgery for various reasons, both scheduled and unscheduled. First, I had a teeny bleedy problem (PROTIP: A IGNORE THE WELL MEANING ADVICE OF THE ONCALL RESIDENT DOCTORS. ADVIL WILL MAKE YOU BLEED.), but then it was smooth sailing the whole way out. I got the surgical drains out on Thursday, which is super because apparently some people have to wear them for up to three weeks. They also expanded my foobs, which is a fun process. The tissue expanders have small metal ports that allow them too be pumped up at regular intervals. The doctor dangles a magnet over the area to find the port, and whereever it attaches to my skin is where they inject the stretching saline. I know, cool and icky at the same time, right?. It doesn't hurt during, because I don't have any nerve endings right now, but it hurts for a day or two after, since the point is to stretch the skin and muscle around the area to make room for implants. (Yup, I'm going to officially be That Girl Who Got Breast Implants.)
Project Fertili-Save is going well, though making me grumpy and emotional over weird things(this is all the apology you're going to get if I randomly start crying when you ask me where the peanut butter is and I don't know, so cherish away). Hopefully that should all be over next week.
After a thorough slice and dice of my lymph nodes, they discovered that all the ones they took out are completely cancer free (YAY!) which means it would be extremely unlikely that there are any cancerous cells camping out anywhere else in my body. YAY! WIN FOR THE LYMPHATIC SYSTEM!
And now, the biggest news, which I didn't even actually realize until a few days after surgery. I don't have cancer anymore. They cut it out and took it away. I may feel sort of stiff and grumpy and tired right now, but I just got rid of cancer. I probably had it in college, I definitely had it when I was riding camels in Egypt, and I had it every weekend I got dressed and went out with my friends. And now I don't have it anymore. Just like that! I felt pretty awesome and healthy before this, and if that was WITH cancer, I can't imagine how healthy and awesome I'll be once I'm all recovered. In the meantime though, I'm watching a TON of movies.
P.S. -- THANK YOU in a HUGE way to everybody who came to see me in the hospital, or sent flowers or cards or showed up at my door with an enormous Clueless-themed gift basket. Thanks for your gifts and your emails and your awesome music mixes. Thanks for your phone calls. And most importantly, thanks for not telling me that I smelled funny (not being able to shower for a week is a unique kind of torture). This surgery was one of the harder things I've ever done, and you guys made it such a positive, warm, love-filled experience that I've actually been referring to it as Cancer Christmas.
I have a follow-up with my surgeon on Tuesday, and then I'll be meeting with an oncologist to discuss chemo options. I'll be sure to keep you guys abreast (teehee) of things as they develop.
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