Friday, November 19, 2010
It's Friday
And today is the longest I've gone without doing chemo in four months. It's all up from here, methinks.
Monday, November 15, 2010
Think About Pink: The Code Words of Breast Cancer Awareness
a great article from the NYTimes, which I think echoes the feelings of many Breast Cancer People, myself included. At least breast cancer gives you new things about which to feel righteously indignant.
_______
A friend of mine’s 12-year-old daughter has taken to wearing a bracelet, one of those rubber, Lance Armstrong-style affairs, that says on it, “I ❤ Boobies.”
“Oh, yeah,” she said, vaguely, when questioned about it. “It’s for breast cancer.”
Really?
It’s hard to remember that, not so long ago, the phrase “breast cancer” was not something women spoke aloud, even among themselves. It wasn’t until the early 1970s, with the high-profile diagnoses of the former child star Shirley Temple Black, the first lady Betty Ford and Happy Rockefeller that the disease went public. A short time later, Betty Rollin, an NBC-TV correspondent, published the groundbreaking memoir “First You Cry.” Back then, her grief over losing her breast and the blow cancer dealt to her sex life was greeted with hostility by some critics and dismissed as frivolous. Mammography was just coming into use to detect early-stage tumors. The American Cancer Society was still resisting the idea of support groups for post-mastectomy patients. A woman like Rollin, some said, was supposed to be grateful that she qualified for a radical mastectomy, stuff a sock in her bra and get on with it.
Read the rest at:
http://www.nytimes.com/2010/11/14/magazine/14FOB-wwln-t.html?_r=3&ref=health
Friday, November 5, 2010
Who Never Has to Do Chemo Again? THIS KID.
CHEMO IS OVER! I had chemical warfare agents infused into my veins for four months and lived to tell the tale. What is that, you say? You're made from mustard gas? You're suspended in detergent and you'd like to be injected into my veins? Whatever. Been there, done that. Old news.
The cool kids are now focused on growing hair. Oh, and swapping these temporary chestrocks for something a little more comfortable.
GO HAIR GO!
The cool kids are now focused on growing hair. Oh, and swapping these temporary chestrocks for something a little more comfortable.
GO HAIR GO!
Thursday, November 4, 2010
I Don't Need Witty Subject Headers
BECAUSE MY LAST CHEMO IS TOMORROW!
I just moved into my very own apartment and it is truly fantastamarastic. Since I never knew what would be cause for a "situation" in my old apartment (a dish in the sink? having friends over? not taking out the trash ten days after a mastectomy? not taking the cat to the groomer often enough during chemo?), it was actually more stressful dealing with my roommates than coping with cancer, a bilateral mastectomy, and chemo all put together.
I'm looking forward to coming home after my VERY LAST chemo and for the first time being able to relax and focus on feeling better instead of walking on eggshells and hiding in my bedroom trying not to set off an explosion that I'm too drained to effectively deal with. PRO TIP (now tinged with bonus bitterness!): If you ever know someone who gets cancer, try to remember that while it may inconvenience your life somewhat, it is inconveniencing the Cancer Person to a degree you cannot comprehend. Though you didn't sign up to be a Cancer Friend, they did not sign up to be a Cancer Person. It's unfair to everybody, but try to maintain a certain degree of human decency. Otherwise you'll have to accept that you're a different kind of person than you may have liked to think you were, and accept the friendless, lonely, small life that's part of the package.
I don't have a couch in my new place yet, so in the meantime I am going to construct a box fort to end all box forts in my living room, complete with pillows inside so I can invite people in and lounge in it. I'm imagining something like this, except inside a number of cardboard boxes:
In just over 24 hours, I'll be finishing my last infusion of toxic chemicals ever. Don't put the party hats on quite yet, but hold them at the ready.
I just moved into my very own apartment and it is truly fantastamarastic. Since I never knew what would be cause for a "situation" in my old apartment (a dish in the sink? having friends over? not taking out the trash ten days after a mastectomy? not taking the cat to the groomer often enough during chemo?), it was actually more stressful dealing with my roommates than coping with cancer, a bilateral mastectomy, and chemo all put together.
I'm looking forward to coming home after my VERY LAST chemo and for the first time being able to relax and focus on feeling better instead of walking on eggshells and hiding in my bedroom trying not to set off an explosion that I'm too drained to effectively deal with. PRO TIP (now tinged with bonus bitterness!): If you ever know someone who gets cancer, try to remember that while it may inconvenience your life somewhat, it is inconveniencing the Cancer Person to a degree you cannot comprehend. Though you didn't sign up to be a Cancer Friend, they did not sign up to be a Cancer Person. It's unfair to everybody, but try to maintain a certain degree of human decency. Otherwise you'll have to accept that you're a different kind of person than you may have liked to think you were, and accept the friendless, lonely, small life that's part of the package.
I don't have a couch in my new place yet, so in the meantime I am going to construct a box fort to end all box forts in my living room, complete with pillows inside so I can invite people in and lounge in it. I'm imagining something like this, except inside a number of cardboard boxes:
In just over 24 hours, I'll be finishing my last infusion of toxic chemicals ever. Don't put the party hats on quite yet, but hold them at the ready.
Sunday, October 24, 2010
ONE TO GO: Chemo #7
I had my second to last chemo on Friday, with my mom, my sister, and Blanca in tow (as always, thank you thankyouthankyou). We also met up with Marilyn and her chemo entourage, and picked up some other people in the waiting room. It's at the point where I know almost everyone in NYC who gets chemo on Fridays. And not that I'm anything but glad to meet people, but I'm really ready to start meeting people in some other context.
As per usual, my biweekly infusion of toxic chemicals went off without a hitch, except that we wound up moving into disk three of How I Met Your Mother, which we were going to save for the last session. We quickly realized it wouldn't be a problem though, because we'll have to dedicate lots of time during my last chemo session to celebrating, hopefully with sparkling cider and cupcakes, or rice pudding, or Pinkberry, or other stuff that is too awesome for me to have thought of yet.
We also ordered from Nanoosh, and let me tell you, it is the best part of chemo. I hate to say it, but having my mom buy me all these delicious lunches has almost, but not quite, made the whole cancer thing worth it. Blanca and I split a hummus chicken wrap and some tabouleh, which reminded us of the most amazing restaurant we went to in Cairo, in LBC (life before cancer). I recommend both Tabouleh in Cairo
and tabouleh at Nanoosh.
And I'm hungry - can you tell?
As for side effects this time around, I got pretty twitchy during the infusion - apparently that's a side effect of the Benadryl they give you beforehand - but it goes away pretty quickly. I'm a little bit tired (but it really just feels more like grumpy than anything), and I'm down to about twelve eyelashes total and about as many eyebrow hairs. I am also really, really pale, and the dark circles under my eyes have never been worse. Though I was already forced to develop a personality during the glasses-braces-frizzy hair period of grade school, chemo serves as a refresher course in not being too into one's looks.
The webbing between my fingers is sort of itchy, which is apparently the result of the Taxol leaking out of my capillaries and irritating my skin. Gross. The resolution? Avoid overheating my hands and feet, which means avoiding hot showers, immersing my hands in hot water to do dishes, and even wearing rubber gloves. Though honestly, it feels a little bit like I'm wearing rubber gloves already, since my fingers are pretty numb (especially on my right hand).
Word on the street (or at the cancer hospital, anyway) is that it all goes away within three-ish months.
ONE MORE CHEMO TO GO, PEOPLE. Hold onto your hats.
As per usual, my biweekly infusion of toxic chemicals went off without a hitch, except that we wound up moving into disk three of How I Met Your Mother, which we were going to save for the last session. We quickly realized it wouldn't be a problem though, because we'll have to dedicate lots of time during my last chemo session to celebrating, hopefully with sparkling cider and cupcakes, or rice pudding, or Pinkberry, or other stuff that is too awesome for me to have thought of yet.
We also ordered from Nanoosh, and let me tell you, it is the best part of chemo. I hate to say it, but having my mom buy me all these delicious lunches has almost, but not quite, made the whole cancer thing worth it. Blanca and I split a hummus chicken wrap and some tabouleh, which reminded us of the most amazing restaurant we went to in Cairo, in LBC (life before cancer). I recommend both Tabouleh in Cairo
and tabouleh at Nanoosh.
And I'm hungry - can you tell?
As for side effects this time around, I got pretty twitchy during the infusion - apparently that's a side effect of the Benadryl they give you beforehand - but it goes away pretty quickly. I'm a little bit tired (but it really just feels more like grumpy than anything), and I'm down to about twelve eyelashes total and about as many eyebrow hairs. I am also really, really pale, and the dark circles under my eyes have never been worse. Though I was already forced to develop a personality during the glasses-braces-frizzy hair period of grade school, chemo serves as a refresher course in not being too into one's looks.
The webbing between my fingers is sort of itchy, which is apparently the result of the Taxol leaking out of my capillaries and irritating my skin. Gross. The resolution? Avoid overheating my hands and feet, which means avoiding hot showers, immersing my hands in hot water to do dishes, and even wearing rubber gloves. Though honestly, it feels a little bit like I'm wearing rubber gloves already, since my fingers are pretty numb (especially on my right hand).
Word on the street (or at the cancer hospital, anyway) is that it all goes away within three-ish months.
ONE MORE CHEMO TO GO, PEOPLE. Hold onto your hats.
Thursday, October 21, 2010
NO MORE NEULASTA!
So my last chemo / Neulasta count has turned out to be a little bit off. What? Why, you ask? Oh, it's becuase
I NEVER HAVE TO DO A NEULASTA SHOT AGAIN.
I NEVER HAVE TO DO A NEULASTA SHOT AGAIN.
Ok, I'll back up. Last week, I had a lot of chest pain, and is a big deal in the 'people with serious diseases' club. When I showed up to urgent care, they even let me skip all the lines. However, as soon as an EKG showed that I probably wasn't going to expire in their care, I had to languish in my tiny waiting area for five hours while they ran random tests, waited for test results, and generally tried to figure out why it looked like I was having heart failure, all without ever saying the words "heart failure." After the EKG, blood tests, a D-Daimer test (yea, I don't know what that is either), and a chest x-ray, the official response was "Well, we don't know, but we know it probably isn't any of the things we check for, so you can go home."
Obviously, I immediately headed to Blanca's where I got takeout and bemoaned the loss of a perfectly good Taco Tuesday.
The next morning, I got a phone call from my oncologist, who was able to resolve in five minutes what urgent care couldn't in five hours. Usually, chemo suppresses your immune system and kills your white blood cells, leaving you subject to infection. To prevent this, I've been getting Neulasta shots to stimulate my bone marrow to produce more white blood cells. However, because my body refuses to lie down and take it, chemo hasn't been suppressing my immune system. So with the Neulasta, I had enough white blood cells floating around my body for ten people.
Remember when everything hurt, even my eyebrows? It's because I was having a "bone marrow flare," which can cause chest pain, sternum pain, shortness of breath, and all the symptoms that originally looked like they might be part of a heart problem.
So the upshot here is that I don't have to get Neulasta again, since I obviously don't need it. I'm ecstatic, both because Neulasta is horrible and because it costs six thousand dollars every time I get one. As someone lucky enough to have great insurance, I'm obviously not paying all of that, but even so... Let's just say that I am going to have some very strong opinions on healthcare after this is all over.
Anyway - 7th chemo tomorrow. The show is closing soon, people - get your tickets before they're gone!
Sunday, October 10, 2010
All Told, Not Bad
Status update:
Some combination of Taxol and Neulasta means that my back hurts, my neck hurts, my arms hurt, my eyebrows hurt when I wiggle them, my tongue hurts when I talk, my throat hurts when I swallow, my jaw hurts when I chew. This is actually a great way to discover new muscles that I never gave much thought to before. For example, I have never thought to appreciate the muscles that allow my eyelids to blink, and now they're getting their revenge.
On the up side, I think decreasing the steroids worked, because I'm not in a horrible mood. Or at least, in a surprisingly good mood for someone whose joints and muscles are entirely on strike. But if anyone needs me for a while, I'll be on my couch eating soup and watching TV.
Oh, and if we're counting down (because I am sure am):
TWO MORE ROUNDS OF CHEMO
ONE MORE NEULASTA SHOT
Some combination of Taxol and Neulasta means that my back hurts, my neck hurts, my arms hurt, my eyebrows hurt when I wiggle them, my tongue hurts when I talk, my throat hurts when I swallow, my jaw hurts when I chew. This is actually a great way to discover new muscles that I never gave much thought to before. For example, I have never thought to appreciate the muscles that allow my eyelids to blink, and now they're getting their revenge.
On the up side, I think decreasing the steroids worked, because I'm not in a horrible mood. Or at least, in a surprisingly good mood for someone whose joints and muscles are entirely on strike. But if anyone needs me for a while, I'll be on my couch eating soup and watching TV.
Oh, and if we're counting down (because I am sure am):
TWO MORE ROUNDS OF CHEMO
ONE MORE NEULASTA SHOT
Saturday, October 9, 2010
Food, Makeup, and Sitcoms: A Rundown of Chemo #6
I had chemo number six today, which puts me halfway through Taxol, and 75% of the way through chemo! Today's infusion went without a hitch. They halved my dose of steroids (which is what my oncology team thinks much the cause of my foul mood was all last week). As per usual, it took a long time, but we got through an entire disk of How I Met Your Mother, so it was pretty much perfect in that regard. Also, we DID successfully get delivery to Sloan Kettering, though it wasn't dumplings. I had a Mediterranean Tuna wrap for lunch - so delicious. PRO TIP: If you are getting things infused into your arm, the arm is not very useful during that time. Wraps are easy to eat with one hand (particularly if your friends take the foil and packaging off for you), and thus are an A+ chemo food.
After chemo Mom, Blanca and I went to Sephora to pick up eyebrow filler, since mine are looking a little sparse. After extensive online research and real-life testing, this is the one I wound up with:
It's amazing. Honestly, I'll probably keep using it even when my eyebrows are back in full force.
They seem to be falling out very, very slowly. In another month, I expect them to be mostly, but maybe not totally, gone (everyone collectively cross your fingers for my eyebrows and eyelashes). The good part (because with cancer, it's important to cobble together all possible "Good Parts") is that they come back very quickly - Cancer Friend Katie's were back within three weeks with a little help from Lastisse.
Nathan pointed out today that it's really time to start planning how to celebrate my last round of chemo, and I agree, as it takes about a month to plan a proper "last chemo ever" party. Obviously, there should be food. Obviously, there should be friends. Beyond that, I'm open to suggestions.
After chemo Mom, Blanca and I went to Sephora to pick up eyebrow filler, since mine are looking a little sparse. After extensive online research and real-life testing, this is the one I wound up with:
 |
| Urban Decay Brow Box - A Chemo Must |
It's amazing. Honestly, I'll probably keep using it even when my eyebrows are back in full force.
They seem to be falling out very, very slowly. In another month, I expect them to be mostly, but maybe not totally, gone (everyone collectively cross your fingers for my eyebrows and eyelashes). The good part (because with cancer, it's important to cobble together all possible "Good Parts") is that they come back very quickly - Cancer Friend Katie's were back within three weeks with a little help from Lastisse.
Nathan pointed out today that it's really time to start planning how to celebrate my last round of chemo, and I agree, as it takes about a month to plan a proper "last chemo ever" party. Obviously, there should be food. Obviously, there should be friends. Beyond that, I'm open to suggestions.
Thursday, October 7, 2010
Cool Things To Do In NYC Tomorrow
1. Visit the Statue of Liberty.
2. Shop on Madison Avenue.
3. Eat dumplings in Chinatown.
4. Come to Sloan Kettering for a chemo party.
We'll be watching How I Met Your Mother (thanks Amanda!) and doing other things that are more awesome than whatever else you were doing. And now that I mention it, maybe there will be some dumplings as well. Seriously - someone coming to chemo tomorrow let me know whether we can Seamlessweb some dumplings to the Breast Center. Blanca, I'm looking at you. Seriously...I am at your apartment right now looking at you. Maybe we can sneak them inside in plastic bags so no one smells them. Then we can all hide in this closet from the waiting room to eat them.
Three more rounds of chemo to go - come for the adventure, stay for the dumplings.
2. Shop on Madison Avenue.
3. Eat dumplings in Chinatown.
4. Come to Sloan Kettering for a chemo party.
We'll be watching How I Met Your Mother (thanks Amanda!) and doing other things that are more awesome than whatever else you were doing. And now that I mention it, maybe there will be some dumplings as well. Seriously - someone coming to chemo tomorrow let me know whether we can Seamlessweb some dumplings to the Breast Center. Blanca, I'm looking at you. Seriously...I am at your apartment right now looking at you. Maybe we can sneak them inside in plastic bags so no one smells them. Then we can all hide in this closet from the waiting room to eat them.
Three more rounds of chemo to go - come for the adventure, stay for the dumplings.
Monday, September 27, 2010
The Secret Lives of Hip, Urban, Cancerous Twenty-Somethings
In case you were curious (you were):
I have turned down multiple invitations to go out and do cool things in recent days to instead stay home and play one of my favorite games - "How Much Fur Can I Brush Out From My Cat."
All the jokes about me eventually becoming a cat lady suddenly feel much more real.
I have turned down multiple invitations to go out and do cool things in recent days to instead stay home and play one of my favorite games - "How Much Fur Can I Brush Out From My Cat."
All the jokes about me eventually becoming a cat lady suddenly feel much more real.
Onto the Next Thing: Chemo #5
On Friday I had my first Taxol treatment, and I'm happy to report that I didn't have any weird allergic side effects or any of the scary stuff that people tend to worry about with Taxol. A big plus - I can still feel my fingers and toes (for now)! A bigger plus - I'm more than halfway done with chemo!
Courtesy of CaitFord (who gets a huge thank you for coming all the way up from DC), I also go to see "How to Catch a Thief" during the cheems this week. Since a Taxol infusion is about three and a half hours long, I think I'm going to take the opportunity to watch more movies, since I typically can't ever sit still long enough to finish one.
On the slight downside, I've anecdotally heard that it's common to feel very depressed on Taxol. While I normally wouldn't worry about it since I tend more towards the 'irrationally filled with joy all the time' end of the spectrum, I got hit with the foulest of foul moods about 24 hours post Taxol.
I think it's only fair to also tell you guys the things that aren't fun - I know that other Cancer People read this and that future Cancer People might read it one day, and it's important to know that despite appearances cancer is not all fun, games, and getting presents for looking so hot while bald. And practically speaking, if I bite your head off at some point in the next few weeks, we can all look back at this timestamped blog entry and say that you had ample warning to tread carefully.
So in the interest of honesty, what follows is a list of things that have not individually made a lasting, measurable dent in my funk since Saturday evening:
- dark chocolate with French lavender and salted pistachio
- milk chocolate with cinnamon and almonds
- Saks Fifth Avenue
- Forever 21
- '90s movies
- a bagel
- bacon
- honey mustard
- sushi
- the cat
- a shower
- a cry (or three)
- Apples to Apples
Luckily, all these home cures taken in combination with wonderful friends do seem to have some effect, but it should still be noted that while I hope this funk lifts soon, for a little while I might be a bit off-kilter.
Courtesy of CaitFord (who gets a huge thank you for coming all the way up from DC), I also go to see "How to Catch a Thief" during the cheems this week. Since a Taxol infusion is about three and a half hours long, I think I'm going to take the opportunity to watch more movies, since I typically can't ever sit still long enough to finish one.
On the slight downside, I've anecdotally heard that it's common to feel very depressed on Taxol. While I normally wouldn't worry about it since I tend more towards the 'irrationally filled with joy all the time' end of the spectrum, I got hit with the foulest of foul moods about 24 hours post Taxol.
I think it's only fair to also tell you guys the things that aren't fun - I know that other Cancer People read this and that future Cancer People might read it one day, and it's important to know that despite appearances cancer is not all fun, games, and getting presents for looking so hot while bald. And practically speaking, if I bite your head off at some point in the next few weeks, we can all look back at this timestamped blog entry and say that you had ample warning to tread carefully.
So in the interest of honesty, what follows is a list of things that have not individually made a lasting, measurable dent in my funk since Saturday evening:
- dark chocolate with French lavender and salted pistachio
- milk chocolate with cinnamon and almonds
- Saks Fifth Avenue
- Forever 21
- '90s movies
- a bagel
- bacon
- honey mustard
- sushi
- the cat
- a shower
- a cry (or three)
- Apples to Apples
Luckily, all these home cures taken in combination with wonderful friends do seem to have some effect, but it should still be noted that while I hope this funk lifts soon, for a little while I might be a bit off-kilter.
Sunday, September 19, 2010
Wednesday, September 15, 2010
Cancer Benefits
One of the benefits of cancer that they don't tell you about is that you can basically bring anything you want past airport security if you tell them that you need it to appease your raging cells.
This weekend, I got to bring onto the plane all the liquids I wanted, including a liter-size bottle of water, about 47 snacks, and about a bajillion pills that I think are technically controlled substances. I also got my own row on every flight I was on. You know...in case I got really chemo-tired and needed a nap.
I also got the opportunity to meet Katie this weekend, who is another Cancer Benefit. As two of the very, very few twenty four year olds dealing with this stupid malignant garbage, we pretty much had to talk to each other (thanks, cancer websites!), especially after I found out that she lives in Ann Arbor. Our friendship was sealed after a few emails, but our soulmateship (yes, soulmateship) was cemented when she picked me up from the airport and we discovered that we were already wearing the exact same nail polish color. It's hard to decide whether I was more excited to hang out with Nathan or Katie this weekend, but the two of them together in the same town makes Ann Arbor tops on the list of hip towns in the Midwest. (Lists can have one item in them, right?)
This weekend, I got to bring onto the plane all the liquids I wanted, including a liter-size bottle of water, about 47 snacks, and about a bajillion pills that I think are technically controlled substances. I also got my own row on every flight I was on. You know...in case I got really chemo-tired and needed a nap.
I also got the opportunity to meet Katie this weekend, who is another Cancer Benefit. As two of the very, very few twenty four year olds dealing with this stupid malignant garbage, we pretty much had to talk to each other (thanks, cancer websites!), especially after I found out that she lives in Ann Arbor. Our friendship was sealed after a few emails, but our soulmateship (yes, soulmateship) was cemented when she picked me up from the airport and we discovered that we were already wearing the exact same nail polish color. It's hard to decide whether I was more excited to hang out with Nathan or Katie this weekend, but the two of them together in the same town makes Ann Arbor tops on the list of hip towns in the Midwest. (Lists can have one item in them, right?)
Friday, September 10, 2010
Canceriffic: Chemo #4
I had my LAST AC CHEMO today. Thanks for coming Mom, Marilyn, and Marcella! It was, as per usual, totally uneventful. They did a full bloodwork on me to see how my kidneys and whatnot are holding up, and everything is like that of a healthy person, except that this is the second time my blood sugar has been 'low normal.' (The first time was before I even started chemo.) I got it in a voicemail, so does anyone want to tell me what that actually means? They told me not to worry about it unless I don't feel well, in which case give them a call. Beyond that, red and white blood cells are holding steady - good job, self.
After chemo I went out for secondlunch (broccoli and cheese quiche with salad), having eaten firstlunch (roast beef and gruyere sandwich) during chemo, obviously. Then I went to the farmer's market with my mom, and then came home and made fresh corn and black bean salad for dinner with my farmer's market finds.
I'm leaving for Ann Arbor after my Neulasta shot tomorrow, and I'm REALLY looking forward to getting through airport security with pieces of metal in my chest!
When I get back, on to Taxol!
After chemo I went out for secondlunch (broccoli and cheese quiche with salad), having eaten firstlunch (roast beef and gruyere sandwich) during chemo, obviously. Then I went to the farmer's market with my mom, and then came home and made fresh corn and black bean salad for dinner with my farmer's market finds.
I'm leaving for Ann Arbor after my Neulasta shot tomorrow, and I'm REALLY looking forward to getting through airport security with pieces of metal in my chest!
When I get back, on to Taxol!
Tuesday, September 7, 2010
Quick Update
As a Cancer Person, my life is extremely busy, productive, and awesome, so I only have time for this oh-so-brief update before I whisk myself off to yet another awesome event (seriously though, I'm on my way out the office door to go get pho for dinner).
No crazy side effects to report yet, still holding up ok. I had one of those annoying dull headaches all last week, but it finally seems to have subsided. Interestingly, I also had the Daisy Sour Cream jingle stuck in my head all last week, and as that vanished, so too did my headache. Listen to it - it's weirdly addictive.
Chemo this week is on THURSDAY instead of Friday, so if you find yourself free on Thursdays and have a thing for hospitals, sandwiches, or board games, come to chemo at 11:00!
As added incentive, it may be your last chance to see me this week, because I'm going to Ann Arbor on Friday for the weekend. Officially, I'm visiting Nathan, but between you and me, internet, I'm going because there's an amazing sandwich shop in Ann Arbor, which has the biggest sandwich menu I've ever seen. I'm taking suggestions for what to order this time.
No crazy side effects to report yet, still holding up ok. I had one of those annoying dull headaches all last week, but it finally seems to have subsided. Interestingly, I also had the Daisy Sour Cream jingle stuck in my head all last week, and as that vanished, so too did my headache. Listen to it - it's weirdly addictive.
Chemo this week is on THURSDAY instead of Friday, so if you find yourself free on Thursdays and have a thing for hospitals, sandwiches, or board games, come to chemo at 11:00!
As added incentive, it may be your last chance to see me this week, because I'm going to Ann Arbor on Friday for the weekend. Officially, I'm visiting Nathan, but between you and me, internet, I'm going because there's an amazing sandwich shop in Ann Arbor, which has the biggest sandwich menu I've ever seen. I'm taking suggestions for what to order this time.
Saturday, August 28, 2010
Three Down, Five to Go: Chemo #3
I had my third AC chemo yesterday, and despite forgetting to bring Apples to Apples, I think we managed to have a good time anyway - thanks Mom, Aunt Melina, Blanca, Marilyn, and Carolyn!
After chemo, Kate D got into town, so we got some desserts (and giant bottles of water for me) and then went to Blanca's house, where we laid around, ordered Thai and Pinkberry for delivery, and loafed around until midnight when I remembered that I just had chemo and should probably go home.
Today I'm getting brunch at noon and then my Neulasta shot at 3:30. The nurse gave me all my blood counts yesterday at chemo, and according to my white blood cells, red blood cells, and whatever else they measure when I come in, before my first chemo, I was at the highest end of the normal range for everything - basically, except for having had cancer, I was super crazy healthy. She ran down the blood tests for before my second chemo, and then the one I did today before my third chemo, and surprisingly, nothing has changed. In fact, my white blood cells have even jumped UP slightly from where they were before my first chemo. So that's the explanation for why I haven't been feeling tired and sick all the time - I'm not! (Thanks Neulasta, I guess)
So at this point, I really had to ask. I mean, I haven't felt nauseous or thrown up, I eat whatever I want, my blood counts haven't dropped, I'm not tired, I haven't been thrown into chemopause, and despite having shaved my head, I'm getting a little slow growing stubble action going on. The worst side effects I've had have so far been from Neulasta. So, is it working? Am I doing chemo wrong? Am I drinking so much water I'm flushing it out of my body before it can work? The nurse assured me that some people just react to chemo well, and the fact that I was, compared to the majority of people who get chemo, super crazy healthy before coming into it probably really helped. She also noted that while the internet can be a fantastic resource, much of what you find on the internet will deal with people who are having the worst possible side effects, because of course, who else is going to take to the internet to talk about it (except me, I guess?). Fair enough. I'm not counting my chickens before they're hatched, but it really would be great to get through this without feeling really yucky.
Oh, and since I finally remembered -- here's a picture of the pixie cut I rocked for a few days before we shaved my head. (And no, I don't think you're ever getting totally bald pictures!)
After chemo, Kate D got into town, so we got some desserts (and giant bottles of water for me) and then went to Blanca's house, where we laid around, ordered Thai and Pinkberry for delivery, and loafed around until midnight when I remembered that I just had chemo and should probably go home.
Today I'm getting brunch at noon and then my Neulasta shot at 3:30. The nurse gave me all my blood counts yesterday at chemo, and according to my white blood cells, red blood cells, and whatever else they measure when I come in, before my first chemo, I was at the highest end of the normal range for everything - basically, except for having had cancer, I was super crazy healthy. She ran down the blood tests for before my second chemo, and then the one I did today before my third chemo, and surprisingly, nothing has changed. In fact, my white blood cells have even jumped UP slightly from where they were before my first chemo. So that's the explanation for why I haven't been feeling tired and sick all the time - I'm not! (Thanks Neulasta, I guess)
So at this point, I really had to ask. I mean, I haven't felt nauseous or thrown up, I eat whatever I want, my blood counts haven't dropped, I'm not tired, I haven't been thrown into chemopause, and despite having shaved my head, I'm getting a little slow growing stubble action going on. The worst side effects I've had have so far been from Neulasta. So, is it working? Am I doing chemo wrong? Am I drinking so much water I'm flushing it out of my body before it can work? The nurse assured me that some people just react to chemo well, and the fact that I was, compared to the majority of people who get chemo, super crazy healthy before coming into it probably really helped. She also noted that while the internet can be a fantastic resource, much of what you find on the internet will deal with people who are having the worst possible side effects, because of course, who else is going to take to the internet to talk about it (except me, I guess?). Fair enough. I'm not counting my chickens before they're hatched, but it really would be great to get through this without feeling really yucky.
Oh, and since I finally remembered -- here's a picture of the pixie cut I rocked for a few days before we shaved my head. (And no, I don't think you're ever getting totally bald pictures!)
Wednesday, August 25, 2010
Well Put
I stumbled across this article today, written by a journalist who was recently diagnosed with melanoma (check your skin, people). It described so well the experience I've had when telling family and friends about my cancer that I wanted to share it. Think of it as the Hallmark card version one of my awkward thank yous - this time you get to hear it from someone more eloquent.
Despite what a certain kooky Showtime series may lead you to believe, cancer is not all dancing on the furniture and cartwheeling in the halls. Connection is all we have in this world, and you, with your generosity and your spirit, have managed to sync me up to its biggest, most powerful network. To put it in geek terms, I'm on the grid, lit up with everything that's been coming my way. At times it's been overwhelming, your goodness. I've found myself sobbing and laughing at the same time, reading your messages, listening to your voice mails, hanging out with you, astonished at the enormity of your hearts. You've given me the best week of my kickass life. (Sorry, spring break '85.)
The other day my deeply adored friend Walt wrote three simple words. "Whatever you need." So in case you're wondering, that's what you get when you get cancer. You get love from every corner of the world, from friends and strangers. You get people throwing open their doors, extending their hands, showing up at your house with wine. You tap into something so amazing it could break your heart.
If you're interested, you can read the full article, called The Upside to Cancer, on Salon.
And in other news, Chemo #3 on Friday! I believe there's still some floor space available in my chemo room, and another Apples to Apples player is always welcome.
Despite what a certain kooky Showtime series may lead you to believe, cancer is not all dancing on the furniture and cartwheeling in the halls. Connection is all we have in this world, and you, with your generosity and your spirit, have managed to sync me up to its biggest, most powerful network. To put it in geek terms, I'm on the grid, lit up with everything that's been coming my way. At times it's been overwhelming, your goodness. I've found myself sobbing and laughing at the same time, reading your messages, listening to your voice mails, hanging out with you, astonished at the enormity of your hearts. You've given me the best week of my kickass life. (Sorry, spring break '85.)
The other day my deeply adored friend Walt wrote three simple words. "Whatever you need." So in case you're wondering, that's what you get when you get cancer. You get love from every corner of the world, from friends and strangers. You get people throwing open their doors, extending their hands, showing up at your house with wine. You tap into something so amazing it could break your heart.
If you're interested, you can read the full article, called The Upside to Cancer, on Salon.
And in other news, Chemo #3 on Friday! I believe there's still some floor space available in my chemo room, and another Apples to Apples player is always welcome.
Monday, August 16, 2010
We Knew the Day Would Come
So one of the things they don't tell you about your hair falling out is that it HURTS! Have you ever slept with your hair flopped over the wrong way so it made a weird part, and then you woke up with a sore head? I've been having that feeling all over my entire head for the last two days. So finally, this afternoon, Nathan shaved my head. Well, first he went out and got us gyros, and then we ate gyros, and then we shaved my head. And let me tell you, despite cutting off over a foot of hair and already having lost half of it, there was still a TON left over with which to make a huge mess of the bathroom.
One of the weirdest things I've noticed is that the ends of hair that come out of my head look burnt. Instead of having that little white bulb attached to the end that most hairs that fall out normally have, mine almost like someone took a match to them for a second or two. They're blacker than my hair and kind of fried. I've felt so good (or at least, so not bad) that I sometimes forget what a number chemo really does on your body. At least I know it's working!
It was actually sort of fun to shave my head. We discovered that I have a great shaped head for baldness, and that my head is really cold without hair or a hat. We also discovered that Nathan could definitely have a fallback career as a barber. And it feels SO much better than the constant mild headache I had going on before.
And on that note, I am going to allow my newly smoothed head to hit a pillow, because I'm pretty zonked and Neulasta pain seems to be setting in again (though hopefully this time I can stay ahead of it with mega-doses of Advil).
One of the weirdest things I've noticed is that the ends of hair that come out of my head look burnt. Instead of having that little white bulb attached to the end that most hairs that fall out normally have, mine almost like someone took a match to them for a second or two. They're blacker than my hair and kind of fried. I've felt so good (or at least, so not bad) that I sometimes forget what a number chemo really does on your body. At least I know it's working!
It was actually sort of fun to shave my head. We discovered that I have a great shaped head for baldness, and that my head is really cold without hair or a hat. We also discovered that Nathan could definitely have a fallback career as a barber. And it feels SO much better than the constant mild headache I had going on before.
And on that note, I am going to allow my newly smoothed head to hit a pillow, because I'm pretty zonked and Neulasta pain seems to be setting in again (though hopefully this time I can stay ahead of it with mega-doses of Advil).
Saturday, August 14, 2010
Take That, Chemo
Today is Nathan's birthday (happy birthday, cake baby!), so we went to Jean-Georges, and it was DELICIOUS. And it has three Michelin Stars, no big deal. It was one of the most delicious (and RICHEST!) lunches I've ever had. And happily, I feel fine. We walked around all day, we had a huge lunch, and now I'm at Steph's, hanging out and watching tv. Today is supposed to be the most nauseous day, so good job hanging in there, body.
And take that, chemo. You're not taking away my summer, you're not messing up my boyfriend's birthday, and you are CERTAINLY not ruining my lunch. Stick to what you're good at - knocking out every single cancer cell that might still be hanging out in my body.
Oh, and for those of you who were wondering what my wig looks like, here's a picture of Nathan and me outside right after lunch.
PS - Aunt Mary and Uncle Lonnie, thanks for the hats! They're perfect and SO comfy!
And take that, chemo. You're not taking away my summer, you're not messing up my boyfriend's birthday, and you are CERTAINLY not ruining my lunch. Stick to what you're good at - knocking out every single cancer cell that might still be hanging out in my body.
Oh, and for those of you who were wondering what my wig looks like, here's a picture of Nathan and me outside right after lunch.
PS - Aunt Mary and Uncle Lonnie, thanks for the hats! They're perfect and SO comfy!
The Things I Forgot to Mention!
I don't know how I forgot to mention this! I picked up my wig yesterday, and it looks great. I'm going to add a few more layers around the front, but all told, not wiggy, not fake looking, and comfy (which is the most important part!).
Nathan came with me to the wig place, but then had to run to work after a bit. When he left, he asked "So are you going to buzz it today?" And I said probably not, that I wasn't ready to change my hair yet. And he left. My wig guy had to run out front to take care of another customer (since this is a real salon and all). I was alone in the private room in the back, staring at the frizzy hair I'm afraid to blow dry in the mirror and idly pulling out strands, ten to twenty at a time, and letting them fall on the floor. It was probably easier to keep them all on my head because it was curly, since they were all wrapping around one another. It was kind of awesome to see so many come out - like a science experiment. It didn't hurt - they were just like regular loose hairs. As I amassed a small pile on the floor, I started thinking "Wow, are they ALL going to fall out like that? That's going to be such a mess around the apartment. Forget the cat, I'm the real shedder in the house."
Then my wig guy came in. He put a wig cap over my head and tried to fit the wig, but it kept slipping back because I had so much hair, and he laughed when I explained that this is already WAY less hair than I had a month ago. Suddenly, with the option of the wig comfortably available, and no one around, I decided there was really no better time. So I asked Andrew to just chop it off. A pixie cut. The Rihanna. Whatever. Let's do something I would never do in my normal life, since it's gone in a week anyway if I hate it.
So I left the salon with a cross between a regular pixie cut and the Rihanna. I promise I'll post a picture at some point, but it's really hard to take pictures of myself, so, later. I wore it out yesterday and today, and, surprisingly, I have not spontaneously combusted for lack of a ponytail. To be honest, I'd rather have this than my long long hair a mess all the time becuase I'm afraid to pull it out when I style it. Plus, I don't think it will take too long to get back to this length, which I can deal going out in. I think the short haircut gave me something to look forward to. Like, getting my hair back to the length it was sounds impossible. It'll take more years than I can project into the future right now. But two or three inches of hair? I can swing that in a few months!
So I have both very short hair and very long hair (my wig) to wear currently. It's sort of fun to be able to switch it up for a few days. And I promise I'll post some pictures soon!
Nathan came with me to the wig place, but then had to run to work after a bit. When he left, he asked "So are you going to buzz it today?" And I said probably not, that I wasn't ready to change my hair yet. And he left. My wig guy had to run out front to take care of another customer (since this is a real salon and all). I was alone in the private room in the back, staring at the frizzy hair I'm afraid to blow dry in the mirror and idly pulling out strands, ten to twenty at a time, and letting them fall on the floor. It was probably easier to keep them all on my head because it was curly, since they were all wrapping around one another. It was kind of awesome to see so many come out - like a science experiment. It didn't hurt - they were just like regular loose hairs. As I amassed a small pile on the floor, I started thinking "Wow, are they ALL going to fall out like that? That's going to be such a mess around the apartment. Forget the cat, I'm the real shedder in the house."
Then my wig guy came in. He put a wig cap over my head and tried to fit the wig, but it kept slipping back because I had so much hair, and he laughed when I explained that this is already WAY less hair than I had a month ago. Suddenly, with the option of the wig comfortably available, and no one around, I decided there was really no better time. So I asked Andrew to just chop it off. A pixie cut. The Rihanna. Whatever. Let's do something I would never do in my normal life, since it's gone in a week anyway if I hate it.
So I left the salon with a cross between a regular pixie cut and the Rihanna. I promise I'll post a picture at some point, but it's really hard to take pictures of myself, so, later. I wore it out yesterday and today, and, surprisingly, I have not spontaneously combusted for lack of a ponytail. To be honest, I'd rather have this than my long long hair a mess all the time becuase I'm afraid to pull it out when I style it. Plus, I don't think it will take too long to get back to this length, which I can deal going out in. I think the short haircut gave me something to look forward to. Like, getting my hair back to the length it was sounds impossible. It'll take more years than I can project into the future right now. But two or three inches of hair? I can swing that in a few months!
So I have both very short hair and very long hair (my wig) to wear currently. It's sort of fun to be able to switch it up for a few days. And I promise I'll post some pictures soon!
Friday, August 13, 2010
Two Down, Six to Go: Chemo #2
WOOT. Finished chemo number two today, after over three hours of playing Apples to Apples in the waiting room. (Thanks for the rousing game Mom, Dad, Nathan, Blanca, Steph, and Amanda!) We debated ordering pizza but nixed that when we remembered that probably not everyone in the waiting room has been tolerating chemo the way I have so far and would not exactly be down to see (or smell!) a giant pie on the coffee table.
My second AC was relatively uneventful, except that we played more Apples to Apples that I had a tasty chicken and veggie wrap to eat during it. I got that same really unpleasant chlorine-up-the-nose feeling towards the middle and end of the Cytoxan drip, but it goes away and there's really nothing to do about it. Afterwards, we went to a cafe where I drank my umpteenth bottle of water of the day and got some soup, and then my parents drove us all home. Steph and Amanda came over and we watched tv until I felt tired, and I went to sleep around 7:30 or so. I've woken up a bunch of times, so this is not the passed-out sleep of the dead I slept for 16 hours after my last chemo, but I sort of wish it were, since I'm not feeling so hot anyway.
As per usual in my life, I can't tell if I'm hungry or nauseous. While in normal life, I would resolve this by eating, in cancer life, eating is a little suspect right now. Plus, it's Nathan's birthday tomorrow, and I'm pretty sure "Happy Birthday" is a song better sung without my head in a toilet bowl.
My second AC was relatively uneventful, except that we played more Apples to Apples that I had a tasty chicken and veggie wrap to eat during it. I got that same really unpleasant chlorine-up-the-nose feeling towards the middle and end of the Cytoxan drip, but it goes away and there's really nothing to do about it. Afterwards, we went to a cafe where I drank my umpteenth bottle of water of the day and got some soup, and then my parents drove us all home. Steph and Amanda came over and we watched tv until I felt tired, and I went to sleep around 7:30 or so. I've woken up a bunch of times, so this is not the passed-out sleep of the dead I slept for 16 hours after my last chemo, but I sort of wish it were, since I'm not feeling so hot anyway.
As per usual in my life, I can't tell if I'm hungry or nauseous. While in normal life, I would resolve this by eating, in cancer life, eating is a little suspect right now. Plus, it's Nathan's birthday tomorrow, and I'm pretty sure "Happy Birthday" is a song better sung without my head in a toilet bowl.
Thursday, August 12, 2010
Hair Today, Gone Tomorrow
I'm going back to Andrew, my wig guy, today to have my wig fit, cut, and styled. The timing works out perfectly because I think my hair is going to start going any minute. I saw a sort-of clump come out when I was washing it the other day and thought "Here we go!" and then sobbed on Nathan for a few, but I've started to think that may be more a result of the fact that I've even been avoiding styling it for fear it start shedding, so whenever I do brush it, more hairs come out than usual.
I'm glad it held on this long, because it gave me enough time to freak out about it that part of me can't wait to have it gone by now. One, I want to know what's going to happen instead of thinking about it. And two, since I'm too afraid to blow dry it or brush it, it's REALLY not doing me any favors sitting sitting on my head like a poodle that got caught in the rain. At least the wig will be styled!
Also, chemo tomorrow! Amanda is coming down from Boston to come (THANKS!), so that makes the chemo entourage this week my mom, my dad if he can move work around, Nathan, Steph, Blanca, and Amanda. Friends, you guys are SO good to me. I'm coming up with ways I can potentially repay you. For example, I promise to proofread all your grad school papers forever. Even if you decide to go to grad school for traditional African subsistence beetle farming as part of some eventual beetle-obsessed mid-life crisis. I know, you don't have to say it. You're welcome.
I'm glad it held on this long, because it gave me enough time to freak out about it that part of me can't wait to have it gone by now. One, I want to know what's going to happen instead of thinking about it. And two, since I'm too afraid to blow dry it or brush it, it's REALLY not doing me any favors sitting sitting on my head like a poodle that got caught in the rain. At least the wig will be styled!
Also, chemo tomorrow! Amanda is coming down from Boston to come (THANKS!), so that makes the chemo entourage this week my mom, my dad if he can move work around, Nathan, Steph, Blanca, and Amanda. Friends, you guys are SO good to me. I'm coming up with ways I can potentially repay you. For example, I promise to proofread all your grad school papers forever. Even if you decide to go to grad school for traditional African subsistence beetle farming as part of some eventual beetle-obsessed mid-life crisis. I know, you don't have to say it. You're welcome.
Sunday, August 8, 2010
The Worst Idea in History
Honestly, seriously?
I just read an article about a girl in Canada who faked having cancer so people would give her money and attention. She even shaved her head, waxed her eyebrows, and pulled out her eyelashes. I don't care how much money she could get out of it - I don't think I could ever be crazy enough to be bald if I didn't have to be.
I'd rather be me with cancer than not have it and be this chick.
The Elaborate, Lucrative Cancer Lie of Ashley Kirilow
I just read an article about a girl in Canada who faked having cancer so people would give her money and attention. She even shaved her head, waxed her eyebrows, and pulled out her eyelashes. I don't care how much money she could get out of it - I don't think I could ever be crazy enough to be bald if I didn't have to be.
I'd rather be me with cancer than not have it and be this chick.
The Elaborate, Lucrative Cancer Lie of Ashley Kirilow
Friday, August 6, 2010
Marshmallow People (Oh, and Post-Chemo Too)
I would lie to you guys and say that I'm writing this at 6:00 in the morning because I'm just extremely vigorous and productive, but you'd know better. I've been having this feeling right before I fall asleep that I am suddenly enormous like the Stay Puft Marshmallow Man from Ghost Busters and I am almost, but not quite, large and puffy enough to take off from my bed and float around the room, and since it's a weird feeling I can't fall asleep. (And you thought this blog would just be about boring old cancer - it's also about becoming a marshmallow person!)
So instead I am updating you fine people on what's been going on here.
I think I'm through the post-chemo slump. Except for wildly messing with my sleep schedule, it really wasn't that bad. I wasn't nauseous or manic or totally debilitated, or at least, not to a degree that a nap and some medicine couldn't handle.
Neulasta shots, on the other hand, can go die in a fire. Neulasta is a shot you get after the kind of chemo I'm doing (dose dense ACT) to send your bone marrow into overdrive and perk up your white blood cell count. Not everyone who gets chemo needs Neulasta, but if you are doing this type of chemo, the schedule doesn't allow time for your body to pick itself back up again between sessions, so you need Neulasta to help you out.
A common side effect of Neulasta is "bone and muscle pain." Yea, cool, whatever. I'm tough, I'm young, I don't have osteoporosis, I go to the gym, this will clearly be nothing I can't handle, right? WRONG. (Again, Neulasta, seriously. DIAF.) From about Monday to Wednesday this week I became a 90 year old woman with osteoporosis. I could barely get out of bed, let alone walk around. My call to the hospital went something like this:
- Did you take Tylenol?
- Yea, didn't work.
- Do you have anything stronger?
- I took Percocet.
- Did it work?
- No.
- Can you take two?
- Did. Didn't work, but eventually I passed out.
- Oh. Hang tough there, tiger. Bye!
My saving grace has surprisingly been plain old Advil, in quantities I will not tell you about specifically, because this is a family friendly blog and I don't want you to think I'm advocating drug abuse.
My oncologist assured me that the first Neulasta shot will be the worst since I don't actually need it very badly yet (i.e. the chemo hasn't eaten a ton of my white blood cells -- I am thinking of Pac Man here, FYI). But once I need it more, it should do its job nicely and not bug me so much.
I might try to go to sleep now, but since I'm seeking to avoid the marshmallow thing, it might be better to just hop in the shower and go to work for a bit.
So instead I am updating you fine people on what's been going on here.
I think I'm through the post-chemo slump. Except for wildly messing with my sleep schedule, it really wasn't that bad. I wasn't nauseous or manic or totally debilitated, or at least, not to a degree that a nap and some medicine couldn't handle.
Neulasta shots, on the other hand, can go die in a fire. Neulasta is a shot you get after the kind of chemo I'm doing (dose dense ACT) to send your bone marrow into overdrive and perk up your white blood cell count. Not everyone who gets chemo needs Neulasta, but if you are doing this type of chemo, the schedule doesn't allow time for your body to pick itself back up again between sessions, so you need Neulasta to help you out.
A common side effect of Neulasta is "bone and muscle pain." Yea, cool, whatever. I'm tough, I'm young, I don't have osteoporosis, I go to the gym, this will clearly be nothing I can't handle, right? WRONG. (Again, Neulasta, seriously. DIAF.) From about Monday to Wednesday this week I became a 90 year old woman with osteoporosis. I could barely get out of bed, let alone walk around. My call to the hospital went something like this:
- Did you take Tylenol?
- Yea, didn't work.
- Do you have anything stronger?
- I took Percocet.
- Did it work?
- No.
- Can you take two?
- Did. Didn't work, but eventually I passed out.
- Oh. Hang tough there, tiger. Bye!
My saving grace has surprisingly been plain old Advil, in quantities I will not tell you about specifically, because this is a family friendly blog and I don't want you to think I'm advocating drug abuse.
My oncologist assured me that the first Neulasta shot will be the worst since I don't actually need it very badly yet (i.e. the chemo hasn't eaten a ton of my white blood cells -- I am thinking of Pac Man here, FYI). But once I need it more, it should do its job nicely and not bug me so much.
I might try to go to sleep now, but since I'm seeking to avoid the marshmallow thing, it might be better to just hop in the shower and go to work for a bit.
Monday, August 2, 2010
Shoe Steady and Holding
This morning I didn't feel awful, but I didn't feel awesome. It was partly my fault though because I didn't take the sleeping pill I should have taken, so the steroids kept me awake all night. I was a tiny bit nauseous so I didn't go wig shopping, but Kyra came over for lunch and brought me some chicken tortellini soup, which was miraculously the only thing I wanted since seeing it on Kitchen Nightmares (thanks, Gordon Ramsey).
My chemo nurse called today to let me know that this will probably be the worst day, and that I'll most likely feel much better tomorrow. So, yay!
And it's my sister's birthday today -- HAPPY 20th Sara!
My chemo nurse called today to let me know that this will probably be the worst day, and that I'll most likely feel much better tomorrow. So, yay!
And it's my sister's birthday today -- HAPPY 20th Sara!
Sunday, August 1, 2010
Waiting For the Other Shoe to Drop?
I made it out to dinner last night, felt fine. Woke up this morning, felt fine. Nathan made some scrambled eggs with salmon and toast, ate, felt fine. I know it's cumulative, but I really expected to feel much worse already! Aside from sleeping 12 hours a day, this hasn't been so bad yet.
Though today is also my last day of super-strong anti nausea pills and steroids, so maybe tomorrow is my day to stay in bed all day?
In other news, I need to decide on a wig and do it fast, because I've got like...ten days and counting left with hair.
Though today is also my last day of super-strong anti nausea pills and steroids, so maybe tomorrow is my day to stay in bed all day?
In other news, I need to decide on a wig and do it fast, because I've got like...ten days and counting left with hair.
Saturday, July 31, 2010
Happy Hour: Chemo #1
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!
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!
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.
Friday, June 25, 2010
Dr. McCancercure OR Caitlin Has Cancer (Surgery) Part II : Loopy but Good but Loopy OR The Never Ending Quest for Sleep, Private Hospital Rooms, and Edible Food
Caitlin has been out of surgery for a couple of hours now and she looks well. The attempted operation to transform her into half-cyborg half-super alien has been unsuccessful, but they did still manage to get rid of that nasty cancer thing that was growing inside her. But seriously, all good news and I think I speak for everybody when I say that we're grateful that somebody as wonderful and awesome as her can fight and win against something that she was so unlucky to have in the first place.
Caitlin Has Cancer (Surgery)
Caitlin was wheeled away to the Super Luxury Platinum-Level Operating Room here at Sloan-Kettering a couple of hours ago. I, your newly christened guest blogger, have spent the last hour learning how to put shots into her after she's back home, among other fun stuff. We haven't heard anything from any of the surgeons yet (guessing no news = good news?), but will keep everybody updated when I do, when she's out, how she's doing, etc.
Update: Just got done talking with the surgeon who did the actual removal and everything went well. There was no cancer in her lymph nodes, as far as they could tell at this point, and they've passed her on to the reconstruction stage. We'll be hearing back from the reconstructive surgeon in a couple of hours.
Update: Just got done talking with the surgeon who did the actual removal and everything went well. There was no cancer in her lymph nodes, as far as they could tell at this point, and they've passed her on to the reconstruction stage. We'll be hearing back from the reconstructive surgeon in a couple of hours.
My Lumps
I'll be going into surgery tomorrow morning to have some lumps removed, both the ones I grew and the one that grew inside the ones I grew. I'll also be getting some new lumps, which will be sort of fun to wake up to. I won't be able to post updates about how surgery is going or how it went, since I'll be busy being surgered or "recovering" by making rockstar-worthy requests of everyone around me. Luckily though, the official "Caitlin Has Cancer" intern will be hard at work letting you guys know what's going on when I'm in surgery, when I'm out of surgery, and where I am so you can stop by or send whatever it is people with cancer receive while in the hospital. (I think I read somewhere that the traditional gift is designer luggage stuffed with clothes, diamonds and tickets to Fiji.)
SPECIFICS:
I will arrive at the hospital at 11:15 am, and my surgery is scheduled to begin at 1:15. It should last 4 or 5 hours, after which I will go to the recovery room for another hour or two. I will be moved to my inpatient room sometime around 8:00pm. Someone will hop on the blog to post my room number, or I believe the hospital can look it up if you call and ask.
ADDRESS:
Memorial Sloan-Kettering Cancer Center
1275 York Avenue (between 67th and 68th)
New York, NY 10065
While you're waiting, below is a video of someone else talking about their double mastectomy. I'm not the only one who thinks it's really not going to be so bad.
SPECIFICS:
I will arrive at the hospital at 11:15 am, and my surgery is scheduled to begin at 1:15. It should last 4 or 5 hours, after which I will go to the recovery room for another hour or two. I will be moved to my inpatient room sometime around 8:00pm. Someone will hop on the blog to post my room number, or I believe the hospital can look it up if you call and ask.
ADDRESS:
Memorial Sloan-Kettering Cancer Center
1275 York Avenue (between 67th and 68th)
New York, NY 10065
While you're waiting, below is a video of someone else talking about their double mastectomy. I'm not the only one who thinks it's really not going to be so bad.
Wednesday, June 23, 2010
Don't Get Excited
But the results of my lymph node biopsy came back, and they didn't find cancer in the lymph node they tested. While that's awesome, it still doesn't mean there won't be cancer in another lymph node, a bunch of other lymph nodes, or even in the same lymph node and they just missed it. So while this certainly isn't bad news, it's not quite good news either -- more like un-bad news. So here's to un-bad news!
Tuesday, June 22, 2010
Out With the Old, In With the New
This morning I met with the reconstructive surgeon who will be making me some new chestpieces. Apparently the whole process takes about six months or so. First, during the mastectomy, they put in 'tissue expanders,' which are basically big plastic bags. Slowly over a few months, they pump you up by filling the bags with saline. When your skin and muscle is all used to the the new positioning (another few months), you have another surgery to exchange the tissue expanders for implants. Ta-da! You then have boobs. Most people wind up swapping out the implants every 10-15 years, as they either leak or pop or just get old or the technology advances to the point where they can make them look better or something. But besides that, it's all done.
I also had pre-surgery testing this morning, which basically just ensures that you're healthy enough to get surgery and have anesthesia. Except for uncontrollable cell division, I am fit as a fiddle. (PROTIP: If you have multiple doctor's appointments every day that require you to be undressed "from the waist up," dresses should stop being part of your wardrobe. Unfortunately, I forgot that this morning so I had to hang around with a sheet wrapped around my waist.)
This afternoon I'm also meeting with a reproductive specialist, since as some of you may know, chemo might wind up doing a number on your reproductive system. Since the non-mutated parts of my genome are definitely worth saving, I am looking into ways of doing that. I'll spare the readers of this blog the details, but if you would like some specifics, feel free to ask me directly. Suffice it to say that should I one day decide that I would like my home to become a germy, slimy, baby-food smeared catastrophe, I will be able to do that. Oh, and I will also be able to safely pass on my genetics without fear of producing another cancer time bomb baby mutant.
I also had pre-surgery testing this morning, which basically just ensures that you're healthy enough to get surgery and have anesthesia. Except for uncontrollable cell division, I am fit as a fiddle. (PROTIP: If you have multiple doctor's appointments every day that require you to be undressed "from the waist up," dresses should stop being part of your wardrobe. Unfortunately, I forgot that this morning so I had to hang around with a sheet wrapped around my waist.)
This afternoon I'm also meeting with a reproductive specialist, since as some of you may know, chemo might wind up doing a number on your reproductive system. Since the non-mutated parts of my genome are definitely worth saving, I am looking into ways of doing that. I'll spare the readers of this blog the details, but if you would like some specifics, feel free to ask me directly. Suffice it to say that should I one day decide that I would like my home to become a germy, slimy, baby-food smeared catastrophe, I will be able to do that. Oh, and I will also be able to safely pass on my genetics without fear of producing another cancer time bomb baby mutant.
Friday, June 18, 2010
Chubby and Unremarkable
After three hours of waiting and minimal fanfare, I got my lymph node biopsied this morning. I did manage to drink three cups of coffee and nab two bags of pretzels to snack on in the Sloan waiting room though, so the morning wasn't entirely a loss. Either way, everyone who looked at my chubby lymph node today said that it was pretty unremarkable, and if we didn't already know I have cancer nearby, no one would even look at it twice. Chubs could be larger for any number of reasons, even just allergies or a cold. I should expect the results on Tuesday or Wednesday, but really, the results are more for the doctors to plan out my surgery than anything. If there is cancer in my lymph nodes, I'd be finding it out on Friday when they take some out anyway during surgery anyway, so this is basically just a sneak preview.
Normally I'm stoked about the arrival of the weekend because it means I don't have to go to work, but now I'm just stoked because it means I can't have any doctor's appointments. Happy Friday, everyone!
Normally I'm stoked about the arrival of the weekend because it means I don't have to go to work, but now I'm just stoked because it means I can't have any doctor's appointments. Happy Friday, everyone!
Tuesday, June 15, 2010
Lymphatic News (Plus Bonus Information!)
I had a sonogram of my lymph node yesterday, and despite my best efforts to shame him into a crash diet, he was unfortunately still fat enough that they want to biopsy him on Friday. It's like lipo for my lympho.
But for a bit of fun triva: Antioxidants thin your blood, so you can't drink green tea, eat acai berries, put vitamin E oil on your skin, or consume anything particularly antioxidant-rich for two days before surgery (or biopsies). My rate of aging over the next two days is going to skyrocket. By the time I get in there, that "How to Prevent Falls" pamphlet they give out standard to breast cancer patients at the hospital is actually going to be relevant to me.
But for a bit of fun triva: Antioxidants thin your blood, so you can't drink green tea, eat acai berries, put vitamin E oil on your skin, or consume anything particularly antioxidant-rich for two days before surgery (or biopsies). My rate of aging over the next two days is going to skyrocket. By the time I get in there, that "How to Prevent Falls" pamphlet they give out standard to breast cancer patients at the hospital is actually going to be relevant to me.
Friday, June 11, 2010
He Isn't Fat, He's Just Big Boned
So that's why they tell you to get second opinions (and why they say Sloan K is the best hospital to be in). The Sloan gang looked over the results of the MRI I had last week and noticed something NYU apparently missed - one of my lymph nodes is fatter than the rest of them, which (I guess) means it might be chock full of cancer. So I have to get back into Sloan asap (Monday at 10:00am) to get a targeted ultrasound of the area and maybe have it biopsied if things look funky.
Anyway, cancer in my lymph nodes would be bad news bears (ie extra surgery and longer chemo), so lets all hope this lymph node is just big boned.
Anyway, cancer in my lymph nodes would be bad news bears (ie extra surgery and longer chemo), so lets all hope this lymph node is just big boned.
Thursday, June 10, 2010
Some News
I met with the gang at Sloan Kettering today and figured out some what's what. As it turns out, I am BRCA-1 positive, which means I have that weird cancer gene, which gives me a really high chance of getting breast cancer again on the other side at some point. So, in the interest of getting things done and only having to do them once, I figure I'll just get rid of all the things that want to cause me cancer. I'll be having a bilateral total mastectomy on Friday, June 25th, followed by some chemo about a month later. Oh, and I get new boobs. I'm thinking cone-shaped like 80s madonna.
Monday, June 7, 2010
In Which I Get Weird and Preachy (Just the Once, I Promise)
So my roommates and I agreed to ask someone to help us keep the apartment up to snuff for a while, since we figure I'll be a little too wiped during chemo to effectively bleach the grout lines between the kitchen floor tiles and line up the bottles in the medicine cabinet. We asked M, who I used to have help at my old apartment, and who I love, love, love.
This morning when she showed up we got to chatting ("chat" is an extremely generous description of what I manage in Spanish), and she told me that she had just had an abnormal mammogram and is undergoing further testing, but expects it to be cancer because she has already had breast cancer seven years ago. I spent my whole subway ride to work thinking about what a weird and unfair world it is when two people can potentially have the same problem, and be entirely differently equipped to deal with it. I got breast cancer and my pressing concerns were how to keep my apartment well-dusted and lavender-scented, and whether I should get some cute summery highlights in my wig. Someone else could have the same problem and still take the subway down from the Bronx to bleach grout.
This morning was an extra reminder that I am very lucky to be in the position I am while dealing with this problem. I live twenty minutes from the best breast cancer center in the country (the world?), I have a super Cadillac insurance plan, and I have an enormous support network (I can't say it enough so I'm thanking you once more, guys). While I appreciate so, so much all your thoughts, prayers, and well wishes, it would be great if you could subtract a minute or two and instead direct some of that positive ju-ju toward M and toward other people who may not have the luxury of dealing with this problem from a position of similar comfort. Even though this whole cancer thing sometimes seems daunting and scary, compared to most other people in the world, I have it really, really easy.
This morning when she showed up we got to chatting ("chat" is an extremely generous description of what I manage in Spanish), and she told me that she had just had an abnormal mammogram and is undergoing further testing, but expects it to be cancer because she has already had breast cancer seven years ago. I spent my whole subway ride to work thinking about what a weird and unfair world it is when two people can potentially have the same problem, and be entirely differently equipped to deal with it. I got breast cancer and my pressing concerns were how to keep my apartment well-dusted and lavender-scented, and whether I should get some cute summery highlights in my wig. Someone else could have the same problem and still take the subway down from the Bronx to bleach grout.
This morning was an extra reminder that I am very lucky to be in the position I am while dealing with this problem. I live twenty minutes from the best breast cancer center in the country (the world?), I have a super Cadillac insurance plan, and I have an enormous support network (I can't say it enough so I'm thanking you once more, guys). While I appreciate so, so much all your thoughts, prayers, and well wishes, it would be great if you could subtract a minute or two and instead direct some of that positive ju-ju toward M and toward other people who may not have the luxury of dealing with this problem from a position of similar comfort. Even though this whole cancer thing sometimes seems daunting and scary, compared to most other people in the world, I have it really, really easy.
Wednesday, June 2, 2010
Because Cool Kids Make Two Blog Posts in Twenty Minutes
I just got a phone call from Dr. Beth Siegel at NYU with the results of all my scans (PET/CT, MRI, mammogram), and it looks like there's no cancer anywhere else in my body, including my lymph nodes! So it really is just the one funky lump and nothing else, and my cancer seems to be a Stage II.
BIG FAT CELEBRATION!
BIG FAT CELEBRATION!
I'm Dense
I had a mammogram and an MRI yesterday, and learned the following:
1. They let you listen to LiteFM during an MRI, which does not drown out the insanely loud clicking noises.
2. Mammograms are basically pointless on young women, and on me in particular, because I have "dense breasts," which the doctor who analyzed the slides felt the need to illustrate to me by gratuitously poking at my extreme density through the hospital gown. Go ahead, doctor - my chest belongs to science now.
Now I just have to get the results of all these tests together in one place and ready for my appointment at Sloan Kettering on the 10th. Until then, I get to go to work every day and be normal for a while - yay!
1. They let you listen to LiteFM during an MRI, which does not drown out the insanely loud clicking noises.
2. Mammograms are basically pointless on young women, and on me in particular, because I have "dense breasts," which the doctor who analyzed the slides felt the need to illustrate to me by gratuitously poking at my extreme density through the hospital gown. Go ahead, doctor - my chest belongs to science now.
Now I just have to get the results of all these tests together in one place and ready for my appointment at Sloan Kettering on the 10th. Until then, I get to go to work every day and be normal for a while - yay!
Friday, May 28, 2010
Like Getting Into College
I spoke with Sloan Kettering this morning, and they let me know that thanks to the numerous threats phone calls they've received from my loving and diligent family, friends, and family friends from New York down to Brazil and over to India (thank you all), I was able to get appointments with both a surgeon and a medical oncologist, for June 10th (at 11:00am if you wanted to set countdown timers - I know it's pretty exciting).
The surgeon is Dr. Tari King and the oncologist is Dr. Maria Theodoulou. (all you avid Googlers out there are more than welcome to sharpen your research chops and tell me what you find).
Honestly, getting into the best hospital for breast cancer in the US is a weird sort of triumph, like getting into your first choice college all over again, except without any kind of fun or awesomeness. I was in the Museum of Natural History and kind of had to restrain myself from shouting "I AM THE BEST AT CANCER!" I'm sure that if we made cancer into a competitive sport I'd win, but it still seemed in poor taste.
Anyway, more tests on Tuesday, but for now I'm going to enjoy my Memorial Day weekend. Since doctors are probably all going on vacation, I think cancer should take a break for a few days as well. Happy long weekend, everybody!
Thursday, May 27, 2010
Not That I Don't Love the Attention
But it does get difficult appropriately responding to all the very kind phone calls, emails, texts, and facebook messages from the large number of wonderful people I have either tricked into being my friends or who are stuck with me because we're family. Thanks, guys. It really does mean a lot to know you're thinking of me (especially when your thoughts are accompanied by food - just sayin').
However, to streamline the whole process, I've decided to start this blog so there's an easy one-stop shop to get up to date on what you're all dying to know about: my boobs. Yeah, you're welcome in advance.
So here's what's going on so far (skip past this if you're not WebMD-ing along at home):
I have an approximately 3 cm lump. It's invasive ductal carcinoma, and the cells are moderately to poorly differentiated. At this point it doesn't seem like lymph nodes are involved, but who knows until they pop them open and check. I met with Dr. Beth Siegel at NYU Cancer Center yesterday, who seems nice and competent, and she scheduled me for a PET/CT scan, an MRI, and a mammogram. I had the PET scan this morning and the the MRI / mammogram are next Tuesday. I also spoke with someone at Sloan-Kettering today, and they are having a nurse read over my file to see whether I should be scheduled to meet first with a surgeon or a medical oncologist.
That's all the information I have right now, but I'll try to update this regularly so that I can hopefully spend less time talking cancer, and have more time to sit on a tuffet, eat bonbons, and pull the cancer card with enough success to get free appetizers at restaurants.
Subscribe to:
Posts (Atom)