I'm writing this post as I sit here in the chemo suite at Carle Hospital in Urbana, getting my premedications for my final dose of Taxol. (I can already hear the collective cheer ringing in from family and friends near and far.) I'm feeling good knowing that my first course of chemo is coming to an end. Also, the anxiety that I wrote about last week has subsided (although it hasn't gone away entirely).
This may seem obvious, but I will not miss Taxol. After all, it has done a fairly good job of stripping me of head hair, annoying my immune system, and jerking my digestive tract around. I have to say, though, that at the very least, Taxol has become a known quantity, and one that is also relatively mild on my system. I'm not expecting to be so pampered during my post-surgery course of chemo in April and May, when I'll get Adriamycin and Cyclophosphamide (A/C). Here's a link to some general info regarding A/C: http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/AC.aspx, which I'll be getting infused every two weeks over an eight week period (four cycles).
In other news, my surgery (modified radical mastectomy on the right side) is coming right up, scheduled for March 7th, and mom is coming for a couple of weeks to help out (yay, Mom!). I know it is considered a big milestone, but the surgery itself is not causing me any particular worry or anxiety. I'm mostly anxious to know to what extent the tumors have shrunk or gone away. I will be getting an MRI in the next few days, which will help determine that. However, the pathology to be conducted on what is removed--breast and lymph nodes, including any remaining tumors or scar tissue--will provide a definitive answer regarding the extent to which the bitchslaps that made up the first round of chemo have done their job. We know that there has been rapid and extensive tumor shrinkage, but my oncologist is still able to feel something at the tumor sites during physical examination. That said, what she feels is very poorly defined, and when I try to feel around in the same locations, I can't feel much at all. So, my doc and I are hopeful that what is still there is scar tissue and not actually the tumors. The MRI will help, but that only goes so far in helping doctors know what's what when things show up in the images. We just won't know the status of shrinkage/disappearance until the post-surgery pathology is complete.
Alright--the Benadryl buzz is setting in fast, so I'm signing off.
The first slap
This photo was taken the day after I was diagnosed, and it is my first bitch slap at cancer. I'm the one with the icepack symbolically placed on my boob. My teammates changed our team's uniform to pink at the last minute, and I came off the soccer field that night with one goal and a whole lot of love. Several of these women are my close friends, but they are all warriors, and they all helped me set the tone for this fight.
Wednesday, February 26, 2014
Tuesday, February 25, 2014
I think this book is for me
I have been mulling over several things that I would like to blog about this week, and I may very well get to them in the next few days. But if you haven't heard this morning's interview on National Public Radio with Madhulika Sikka about her new book, A Breast Cancer Alphabet, please listen. I'm not 100% on the same page as she is about her experiences with breast cancer, but that is part of the point: There are particular expectations and dominant discourses about how people deal with disease, and my guess is that very few people are 100% on the same page as anyone else about breast cancer. However, listening to the story made me nod in agreement, laugh, and cry. I'd encourage you to lend this story a few minutes of your day.
http://www.npr.org/2014/02/25/280242097/a-is-for-anxiety-g-is-for-guilt-the-abcs-of-breast-cancer
And if you're interested in reading further about the topic of illness narratives, here's another link for you: http://baybreastcare.co.za/you-wish-you-had-breast-cancer/. Writer Sally Davies has been studying the topic of illness narratives--both those that are constructed and ascribed to cancer patients and those with other medical ailments, and those that are re-written and re-framed by patients. (She also discusses my blog in her post.) There is a lot of food for thought here, but for me it hits home the power and agency of taking at least a bit of control of my own story--of my own way of dealing with breast cancer. I have so much more to say about all of this, but these two links will have to suffice for now.
http://www.npr.org/2014/02/25/280242097/a-is-for-anxiety-g-is-for-guilt-the-abcs-of-breast-cancer
And if you're interested in reading further about the topic of illness narratives, here's another link for you: http://baybreastcare.co.za/you-wish-you-had-breast-cancer/. Writer Sally Davies has been studying the topic of illness narratives--both those that are constructed and ascribed to cancer patients and those with other medical ailments, and those that are re-written and re-framed by patients. (She also discusses my blog in her post.) There is a lot of food for thought here, but for me it hits home the power and agency of taking at least a bit of control of my own story--of my own way of dealing with breast cancer. I have so much more to say about all of this, but these two links will have to suffice for now.
Wednesday, February 19, 2014
Anxiety (or, Please Pass the Xanax)
My biggest battle this week has not been against the nasty cold I got, but rather, anxiety. It has manifest itself in my racing mind, improper breathing (heaving the chest, rather than breathing from the diaphragm) and hyperventilation to the point of lightheadedness. It seems odd that I would be consumed by anxiety in this way, as this isn't how it felt even at the most stressful parts of this process so far: Diagnosis, waiting for pathology results, chemo still being an unknown. But I think I'm figuring it out: I had my second-to-last infusion today of my first 12 week course of chemo. Next week will bring that phase of treatment to a close, which means that surgery, a rougher course of chemo (Adriamycin and Cyclophosphamide, known as A&C), and radiation are still ahead of me.
Upon diagnosis and early in this course of chemotheraphy, everything was a mystery to me. Would I have to vomit every day? When will I go bald? Will my fingernails be affected? What will my energy level be like? What if my white cell count goes too low? And most of all: WHAT IF IT DOESN'T WORK? Well, at this point, these questions have pretty much been answered. No vomit so far, not 100% bald (but close enough--see photo below, oh curious ones), my fingernails are slightly more brittle but still growing, my energy has been fine for the most part, my white cell count has dipped slightly below normal (but is close enough to normal to not impact treatment), and SO FAR IT'S WORKING! Clearly, I feel really good about all of these things and that's a) because it hasn't been so bad, and b) the news is good in terms of tumor shrinkage.
So, Lara, why the long face? Why the anxiety? Well, let's all remember: I DO have cancer. But I don't think that's driving the sudden increase in my anxiety. I think what's driving it is a renewed sense of the unknown for treatments that are now just around the corner. I'll be having surgery on March 7th, and while I'm not particularly worried about it, it's still an unknown. And then in April and May I'll be getting A&C--a stronger chemo; a cocktail that, as my dad kindly put it, will make me look like a cue ball. The nausea should be worse, and from what I understand it does quite a number on my immune system. I've been spoiled so far. I've said all a long that I'm not afraid of the treatments (whatever it takes, right?). But I can't claim to not be anxious about them. Very anxious. And what anxiety does is it feeds the night demons, who then instill fears that I thought I'd already dispelled (e.g., WHAT IF IT DOESN'T WORK?!).
So, what now? Well, I'm turning to what has worked for me thus far. Moving ahead eyes wide open (bring on the treatments!), getting out on the soccer pitch, and not being afraid to medicate when needed. This is bad shit I'm dealing with, I'm sick and tired of it, and if swearing and a healthy dose of Xanax is what it takes to get me over this hump, so be it.
Upon diagnosis and early in this course of chemotheraphy, everything was a mystery to me. Would I have to vomit every day? When will I go bald? Will my fingernails be affected? What will my energy level be like? What if my white cell count goes too low? And most of all: WHAT IF IT DOESN'T WORK? Well, at this point, these questions have pretty much been answered. No vomit so far, not 100% bald (but close enough--see photo below, oh curious ones), my fingernails are slightly more brittle but still growing, my energy has been fine for the most part, my white cell count has dipped slightly below normal (but is close enough to normal to not impact treatment), and SO FAR IT'S WORKING! Clearly, I feel really good about all of these things and that's a) because it hasn't been so bad, and b) the news is good in terms of tumor shrinkage.
So, Lara, why the long face? Why the anxiety? Well, let's all remember: I DO have cancer. But I don't think that's driving the sudden increase in my anxiety. I think what's driving it is a renewed sense of the unknown for treatments that are now just around the corner. I'll be having surgery on March 7th, and while I'm not particularly worried about it, it's still an unknown. And then in April and May I'll be getting A&C--a stronger chemo; a cocktail that, as my dad kindly put it, will make me look like a cue ball. The nausea should be worse, and from what I understand it does quite a number on my immune system. I've been spoiled so far. I've said all a long that I'm not afraid of the treatments (whatever it takes, right?). But I can't claim to not be anxious about them. Very anxious. And what anxiety does is it feeds the night demons, who then instill fears that I thought I'd already dispelled (e.g., WHAT IF IT DOESN'T WORK?!).
So, what now? Well, I'm turning to what has worked for me thus far. Moving ahead eyes wide open (bring on the treatments!), getting out on the soccer pitch, and not being afraid to medicate when needed. This is bad shit I'm dealing with, I'm sick and tired of it, and if swearing and a healthy dose of Xanax is what it takes to get me over this hump, so be it.
Wednesday, February 12, 2014
"Are you afraid?"
One of the awesome things about my job as an educational researcher is that I often get to spend time in classrooms and schools, interacting with thoughtful teachers and students. As some of you know, I'm currently conducting a research project in a fourth grade bilingual classroom, and the classroom teacher is the co-principal investigator of the study. I've been spending one to three hours, two to three days a week, in this classroom since September, and that will continue through the remainder of the school year. In the process, I've gotten to know the teacher and the students fairly well. When my breast cancer diagnosis came down in November, my data collection activities were interrupted as I devoted huge amounts of time to meeting with doctors, undergoing various procedures, and planning out and beginning treatment. And, oh yeah, getting my emotional life under some semblance of control.
I told the teacher I'm working with about my diagnosis right away so that she wouldn't wonder what was going on, and because she has become a professional companion and friend. But I didn't tell her students; at least not right away. I wasn't sure how, and I also just wasn't there at the school as much. I had planned to tell them before the holiday break, but I was only in the classroom for short spurts here and there during December, and the time didn't seem right when I was there. By the time I resumed regular data collection activities in January, I had lost a significant amount of hair, and was wearing hats regularly. The teacher let me know that she hadn't told them yet, and she asked me if I wanted to tell them. Right then, on that day, in that moment. I hadn't been planning on it, and was a bit worried about it. I wasn't worried about whether they should know or what they would do with the information. Instead, I was worried that I would break down in the process. The teacher encouraged me, however, remarking that sometimes it's good for young people to see others' emotions and how they work through difficult things. She was right. So, then and there, she grouped her 14 kids into a circle on the carpet, and sitting down in the circle, I told them. I didn't break down, but I came pretty close.
I actually think I didn't cry because I was so focused on finding the words in Spanish to explain what was going on. (The teacher speaks in Spanish with them in the mornings and English in the afternoons, and it was mid-morning.) But the students helped me out. When I didn't know a word in Spanish, I would provide it in English, and they would then help me learn the Spanish word. This process prompted a few side discussions among the students as they debated the best translations for things like "chemotherapy" "breast cancer" and "tumor shrinkage." What really struck me, though, were the questions that these young people asked: "What is it about the treatments that makes your hair fall out?" "Is cancer contagious?" "What does cancer look like?" "Are you going to be okay?" "Did you cry when you found out?" "Do your kids know?" "Are you afraid?"
It's important to note that these are nine and ten year old kids who know about joy and pain--serious joy and pain. Actually, I think most kids know about serious joy. Like many young people, they have had experiences like having a new baby sister or brother born, or a parent getting married to their partner, or going to their uncle's ranch to go horseback riding, or getting a new dog. But many of them have also experienced serious pain: A father disappearing, parents going to jail, a cousin or uncle dying in an accident, a family member getting deported, or a parent getting sick. And they've written about their experiences. The teacher introduced them to the memoir genre early in the school year, and they wrote down their stories--stories that make you smile, laugh, and cry. Stories that make you ask "Why." Stories that make you wonder what the hell policy-makers are thinking when they want to impose curricula enforcing skill, drill and kill instruction and battery upon battery of standardized tests. In these stories, they wrote about their "moments of change" (momentos de cambio) in their lives. When I told them my news, they knew what kinds of questions to ask because despite their young ages, they'd also had significant moments of change--experiences that have become locations from which to understand the world, understand others, and from which to write and read. And on that day, in that circle on the carpet, they recognized that I, too, had experienced a momento de cambio, and they told me as much: "Maestra, you had a momento de cambio." "I think you should write about it." Yes, I will, I told them. And I am. And it helps.
I told the teacher I'm working with about my diagnosis right away so that she wouldn't wonder what was going on, and because she has become a professional companion and friend. But I didn't tell her students; at least not right away. I wasn't sure how, and I also just wasn't there at the school as much. I had planned to tell them before the holiday break, but I was only in the classroom for short spurts here and there during December, and the time didn't seem right when I was there. By the time I resumed regular data collection activities in January, I had lost a significant amount of hair, and was wearing hats regularly. The teacher let me know that she hadn't told them yet, and she asked me if I wanted to tell them. Right then, on that day, in that moment. I hadn't been planning on it, and was a bit worried about it. I wasn't worried about whether they should know or what they would do with the information. Instead, I was worried that I would break down in the process. The teacher encouraged me, however, remarking that sometimes it's good for young people to see others' emotions and how they work through difficult things. She was right. So, then and there, she grouped her 14 kids into a circle on the carpet, and sitting down in the circle, I told them. I didn't break down, but I came pretty close.
I actually think I didn't cry because I was so focused on finding the words in Spanish to explain what was going on. (The teacher speaks in Spanish with them in the mornings and English in the afternoons, and it was mid-morning.) But the students helped me out. When I didn't know a word in Spanish, I would provide it in English, and they would then help me learn the Spanish word. This process prompted a few side discussions among the students as they debated the best translations for things like "chemotherapy" "breast cancer" and "tumor shrinkage." What really struck me, though, were the questions that these young people asked: "What is it about the treatments that makes your hair fall out?" "Is cancer contagious?" "What does cancer look like?" "Are you going to be okay?" "Did you cry when you found out?" "Do your kids know?" "Are you afraid?"
It's important to note that these are nine and ten year old kids who know about joy and pain--serious joy and pain. Actually, I think most kids know about serious joy. Like many young people, they have had experiences like having a new baby sister or brother born, or a parent getting married to their partner, or going to their uncle's ranch to go horseback riding, or getting a new dog. But many of them have also experienced serious pain: A father disappearing, parents going to jail, a cousin or uncle dying in an accident, a family member getting deported, or a parent getting sick. And they've written about their experiences. The teacher introduced them to the memoir genre early in the school year, and they wrote down their stories--stories that make you smile, laugh, and cry. Stories that make you ask "Why." Stories that make you wonder what the hell policy-makers are thinking when they want to impose curricula enforcing skill, drill and kill instruction and battery upon battery of standardized tests. In these stories, they wrote about their "moments of change" (momentos de cambio) in their lives. When I told them my news, they knew what kinds of questions to ask because despite their young ages, they'd also had significant moments of change--experiences that have become locations from which to understand the world, understand others, and from which to write and read. And on that day, in that circle on the carpet, they recognized that I, too, had experienced a momento de cambio, and they told me as much: "Maestra, you had a momento de cambio." "I think you should write about it." Yes, I will, I told them. And I am. And it helps.
Tuesday, February 4, 2014
News Gazette Article
Everyone gets their 15 minutes, right? Well, today a story was published in Champaign-Urbana's newspaper, the News Gazette, about my experiences with diagnosis and how I'm fighting back:
Giving Cancer a Kick in the You Know What. Many thanks to Julie Wurth for the care she took in interviewing me and writing up the story. How very surreal to read about myself in the paper, particularly along side the words "breast cancer."
We are in the midst of a major snow storm here. It's like the arctic out there, with frigid temperatures and blowing snow. I've already gotten a call from the cancer clinic letting me know that they may be closed tomorrow morning. Hopefully I won't have to delay tomorrow's treatment for more than a day or so. This may sound odd, but I actually look forward to my chemo days, particularly since my treatment is working so well. Sure, the side effects are no fun, but who wouldn't want more of the thing that is reversing the cancer's growth?
Giving Cancer a Kick in the You Know What. Many thanks to Julie Wurth for the care she took in interviewing me and writing up the story. How very surreal to read about myself in the paper, particularly along side the words "breast cancer."
We are in the midst of a major snow storm here. It's like the arctic out there, with frigid temperatures and blowing snow. I've already gotten a call from the cancer clinic letting me know that they may be closed tomorrow morning. Hopefully I won't have to delay tomorrow's treatment for more than a day or so. This may sound odd, but I actually look forward to my chemo days, particularly since my treatment is working so well. Sure, the side effects are no fun, but who wouldn't want more of the thing that is reversing the cancer's growth?
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