Tuesday, September 27, 2011

I love teaching middle school because . . .

one class chuckled when I first told them I was sick. They couldn't believe that a seemingly very healthy, joking, happy-looking person could be that ill. Their honesty was refreshing. When I first heard a doctor tell me that it didn't look good, I wanted to say laugh and say, "This is a joke, right?"

after they realized I wasn't joking, they complimented me. As I was trying to explain that I am very sick even though I don't look it, I told them, "it's very strange for me too because I look pretty healthy, right?" I took a tiny pause between pretty and healthy, and they all started reassuring me. "Yes, you look pretty, Miss Parker." "Very pretty!"

when I asked for a couple students to become my helpers, over half of the kids in each class raised their hands.

they cheered when I told them I don't need chemo. I was never expecting that kind of reaction after updating them on my treatment status, but there was an undeniable sweetness to their excitement. It may have helped that I told them my updated treatment plan would be a win-win for everyone because I'd be a lot less cranky than I originally thought.

they keep me honest. I am currently trying to heal myself as much as possible through supplements and nutrition. This diet change involves no sugar, no alcohol, and no caffeine. The first couple days when I cut out my morning latte were tough. I told the kids that my head was pounding and why, and they obviously took notice. The following day, when I had my Peet's cup, they questioned me relentlessly. "Miss Parker, you're not supposed to have that. I thought you were cutting it out. It's not good for you!" I told them I was weaning myself off a little bit at a time. From a medium to a small, then on to green tea. I then told them if they caught me with a latte at any other point this year, I would give it to a student. As of today, I've officially broken up with Peet.

Sunday, September 25, 2011

Things that make me smile

My new gym t-shirt. Something about it makes me feel strong. ;)

A tile sent to me by my mom's best friend or, as I've been thinking of her, my fairy godmother. The card said, "Things could be worse." Not sure if men would think this is worse - I'm almost positive they have lingerie in the Castro that would accommodate this problem.

A bag that I use for my meds. This has become a personal motto.

Monday, September 5, 2011

Dream a little dream (of cancer)

The first week after my diagnosis I woke up feeling great - unaware of my cancer, free from worry. I'd reach for Gus, his stinky little old dog body sleeping next to me, and start to consider all of the fun things we could do on a summer vacation day. And in thirty seconds or fewer, I'd hit the brick wall. I have cancer. The first morning after my diagnosis, the shock was the worst. Though the day before, I'd held it together, pretty remarkably in fact. That morning, the sadness overtook me. To the point that I found it hard to breathe. My whole life had changed, and now I'd be forever linked with cancer. If not a cancer patient, then (hopefully) a cancer survivor. What if I didn't want to be known as a cancer patient or a cancer survivor? What if I just wanted to be me?

My dreams for that first week or so were cancer-free. In my dreams, I was healthy and happy and that was why it was such a shock to wake up and face the truth. And even though my dreams were as vivid and bizarre as usual, I never had a nightmare about my disease. This may have been my subconscious denying that I was sick, but it made my conscious wake-up call really tough.

I've read a few interviews with people that have lost the use of their legs, and they said that in their dreams they can walk and dance. That wake-up call has to be an even bigger bitch than mine. But I get it. Part of it is refreshing, I guess. In theory, it sounds pretty nice to be able to get a break from cancer while I sleep.

This morning, I realized that I've recently been dreaming that I have cancer. Not every dream is about cancer, but, while in my dream, I'm aware of it. It's now a part of me, mentally as well as physically. I guess that's what is called acceptance.

When I think of this, I'm reminded of when I suffered from amnesia as a result of a concussion from an accident when I was fourteen. I fell while walking on the ice of a frozen stream near my house and smashed the side of my head. When I woke up and felt lucid for the first time since the fall, I had lost three years. I thought someone else was President and was convinced that I was three years younger. I also thought that my dog, Jenna, who was recently put down, was still alive. When my mom told me she was dead, the shock felt the same as hearing the news for the first time. It was the same as that morning after my diagnosis.

I guess when it comes down to it I think I'd choose to be aware rather than be ignorant, no matter what my consciousness may be. Anyway, the important part is simply the waking up, right?

C-c-c-cancerface, c-c-cancerface

If Lady Gaga was a cancer patient, she would have written this instead of "Pokerface."
Cancerface is the sad, pity-filled puppy dog face that most people give you after they find out you have cancer. This is the reaction that I dread the most, and I've seen it from nearly everyone - friends, family, doctors, nurses, receptionists. Everyone. It seems that cancerface is a bigger epidemic than cancer. Don't get me wrong - I understand if you must use it briefly as a knee-jerk reaction, but it needs to end there.
One nurse-in-training at UCSF had a full-on case of cancerface and used it for the entire hour that I was consulting with the head breast cancer nurse. She did nothing other than sit there with that pity-laden expression and nod at me like I just said my first word whenever I spoke. I'm positive that even Helen Keller could have felt that cancerface. No, I don't know if Helen had cancer, but I am sure the deaf-blindface is pretty similar to cancerface.
To put it plainly, kindness is much appreciated, pity is not. Please don't give me cancerface.

Other things not to do or say to someone with cancer:

Do not say, "Be positive!"
Please don't tell me how to feel. If you have never had cancer, then you have no idea what I'm going through. The anger and sadness were at times overwhelming when I was first diagnosed, and someone telling me to be positive was like a slap in the face. I can be pissed if I want to - I've got freaking cancer. Let me be mad. I know that staying positive is important, but it's okay to have breakdowns too. I think that's not only true of cancer but life. There is one exception for telling me how to cope. If you are a cancer survivor or patient, your advice and even a "you need to stay positive" is welcome.

Do not say, "I hope you make it."
Yes, I've heard it. A "wow, I hope you don't die" is also not appreciated.

Say something, anything, or just listen
I greatly appreciate the support from family and friends and students. Even if you say something "wrong," it's much better than saying nothing at all. A few friends didn't get back to me for days and weeks following me telling them about my diagnosis. It hurt. I'm sure they just didn't know the right thing to say or do, but it was still painful not to hear anything. I tell my students that "I don't know" is a valid answer. If you don't know what to say, "I don't know what to say" works! The best thing someone can say is probably, "Wow, I'm sorry. Is there anything I can do to help?" Those few sentences speak volumes and, yes, I will probably need help.
By the way, I loved the cards and care packages people have sent me. I feel like I got more from my C-day (cancer diagnosis day) than from my b-day (my birthday, ironically I'm a Cancer).

What to do - check in and come visit
The most important thing to me is time with my friends, so please feel free to check in or come see me, especially when I'm too weak to get my butt to San Francisco. I know it may suck to come to the East Bay, but I can pick you up at the BART station. :) Because I'm single, I spend a lot of time alone anyway, which I usually don't mind at all. But now, when I'm alone, it's easier to obsess over my disease and treatments. Time, even phone time or a text, is the greatest gift you can give me.


As a teacher, I must impart that I'm not going to stress over grammar or spelling on this blog, and I'm probably only going to read through posts once before I post them. I'll do my best to correct things, but I repeat I'm not going to stress over it. (See "Good things about cancer"post.) So, all of you grammarians, please don't get your panties in a knot over any imperfections. I know its hard. (Did you get upset over that one? Just a test.)

Good things about cancer - yes, there are some!

1. It makes you reexamine your life.

Being that I'm already very healthy (except for the whole cancer thing), I didn't really learn a lesson about eating better. I didn't get cancer from smoking. I didn't get cancer from being overweight. I've always thought the best way to eat, both health-wise and karma-wise, is vegan, and, even though I haven't always strictly followed this, I've always eaten lots of fruits and veggies and my only "meat" is fish a few times a week.
My reexamination is based upon stress. I believe that the huge stress from a very difficult breakup five years ago started the cancer in my body. Cancer typically takes five years to form a substantial tumor that you can feel. So, as a result, I've started walking a little slower, breathing a little deeper, and generally giving myself a break. No more guilt that I'm not getting as many papers graded as I could or that I'm not working on my novel as much as I should or that my apartment isn't as clean as possible or my dogs aren't getting a long enough walk. It's okay to not be the best at everything at every moment. Cancer feeds off the stress and I'm over feeding cancer. As a side note to the ladies, cancer was also feeding off the birth control pills that I'd been taking, mostly to help with migraines, since I was sixteen. The estrogen in the pill fed my estrogen-receptor positive tumor. So, if there are any women reading this that are taking the pill, I would encourage you to look into other options.

2. It frees you from inhibitions.

I had no idea that a side effect of cancer is acting like Natalie Portman's character from Garden State. As someone who has never thought too much about what other people think of her, I really didn't think I had any inhibitions to lose. I was wrong. Strangely, any free-spirited, spontaneous thought that runs through my mind, I feel the need to act upon. Skip down the sidewalk? Sure. Sing on the BART train? Absolutely. Finding fun in any and every activity? Definitely. Don't get me wrong - I still am a cynical smartass at times, but I now realize how completely important it is to actively look for as many beautifully fun moments during the day as possible. Life is not just short; it's tiny. If life was a person, it would have its own show on TLC for being freakishly small. So, if cancer wants you to be cute indie-girl movie cliche, go for it.

3. It teaches you that life doesn't give a s@#t about your plans.

I've learned this lesson nearly every day; really, everyone has. If I plan a lesson that uses a movie clip and the projector doesn't work, lesson learned. But for the big things, dreams with a spouse, dreams of having children, I've learned that even seemingly simple life goals can be destroyed, or at least royally hindered, in the blink of an eye. A close friend, who is a psychiatrist, told me once that the healthiest people (in terms of mental health) are those with a flexible mind. Ones who can adapt and adjust when their lives don't go according to plan. My own version of this is to allow myself to have a breakdown, mourn the dreams that need to die, and then look in the mirror, tell myself to pull it together and plant the seeds for new dreams. More recently, I've even kind of given up on dreams altogether, which I've realized may be the best solution. It doesn't mean I've given up on life or the search for love or the idea of a family, just the perfect fictional version that was always so important.

4. It's a great get-out-of-everything free card.

What was that, you'd like me to make a casserole for your party? Oh, I don't think I can, it's the cancer. Sorry.
This question was never actually posed to me, however there have been plenty of situations that call for me to say no because of the cancer. Since I've had surgery, I've been very tired and can't handle as much work. And, anticipating six months of feeling like hell because of chemotherapy, I'm not going to be able to function at my usual daily tasks, let alone taking on extra work or social events. Unfortunately, I'm going to miss out on some great opportunities, but I'm also going to get out of a lot of bullsh*t that I don't want to do.
Want me to help clean up the cafeteria after the dance? I'm sorry I can't. Haven't you heard? I have cancer.
**If anyone from school is reading this, I want to emphasize that this was only an example. Of course, I would love nothing more than to stay and help clean up after the dance!

I also think there should be some additional perks to this card - free drinks (while I still can have a drink), discounts on health food and scarves for my soon-to-be bald head, handicap parking, the list goes on and on. And, instead of a physical card, an iPhone app would be preferable. Get on that, Mr. Zuckerberg!

If I find there are more good things, I will add them.

By the way, even though I've done a "good things" list, don't be fooled. A "things that suck" list would be much, MUCH longer.

The email that saved my life (or, at least, my sanity)

CancerGirl was born mostly out of my frustration with the dismissive attitude of my surgeon. On the two occasions that I'd visited my surgeon's office, I left feeling extremely confused and scared. Now, granted, the first visit consisted of an unexpected biopsy, and the second with her telling me that the lump was malignant. Even in the best doctor's hands, I'm sure that people feel confused and scared when faced with that news. Yet I still could not deny my gut feeling. This feeling was validated by a close friend that came with me on the day that I was diagnosed. My surgeon left him feeling confused as well, so I knew it wasn't only "the big C" taking over my emotions. In fact, during that visit, she told me to write down my questions and left the room. She was finished with the appointment but didn't answer any of my most important questions or even tell me specifically what kind of cancer I had. After the appointment, the receptionist gave me referrals to three different doctors: a genetic counselor (to tell me if I had a BRCA gene), an oncologist (for my chemo and/or radiation), and an MRI technician. At promptly 9 a.m. the next morning, I called Blue Cross and spent an hour on the phone verifying that each one of them was in-network. After that, I called the doctors and left messages with receptionists who said they'd get back to me later. I spent that day, a Friday, not-so-patiently waiting for someone to return my phone call. No one did.

On Saturday, I was exhausted from a restless night and crawling the walls with nervous energy. I was faced with two more days of just waiting. I felt that the world was moving in slow motion while my tumor was growing quickly. By that night, I had spent the day alone watching a marathon of "The Big C" and felt scared and desperate. (I know that watching a TV marathon of a show about someone with terminal cancer is not the best idea when first diagnosed, but I was not at my most rational.)

Two days before, the day of my diagnosis, a friend had given me the names of three surgeons whom he knew were top-notch. I started the process of trying to make an appointment on Friday. It was worse than applying for a job. Register with the system at the hospital, verify with Blue Cross that they were in-network, send my imaging CD, pathology slides, and medical records, and wait (again, that four-letter word) for a call from the assistant of the surgeon to then schedule an appointment, which may not be for a long while because the surgeon that I requested was very popular. It was as if the UCSF Cancer Center was the Emerald City, and I was asking to see the Great and Powerful Oz.

So, to deal with my complete lack of control and to see what all the fuss was about, I started researching her Greatness. The surgeon that I was trying to get in to see was one of the best surgeons and researchers in the country. She was not only skilled and passionate about her field, but she was also a human being. (I think the majority of surgeons may actually be robots.) In fact, the first article that I read about her explained that she is a trained singer who takes requests from her patients and sings to them as they go under anesthesia. One of her favorite songs happened to be a song that I absolutely love. I remember saying aloud, "She needs to be my doctor."

But what could I do other than follow the ridiculously long procedure for appointments?

I found her work email address carefully hidden on only one of the many sites that mentioned her. And for the next hour, I set about crafting the perfect email: succinct yet descriptive, emotive but not whiny. I sent that email at around 11 p.m. on Saturday night and took a deep breath. At least I could say I tried. Immediately, I got an auto-response stating she was on vacation until Monday.

The next night, Sunday, at 9 p.m., she called me. I felt as though I was on the phone with a celebrity. I had to pace to calm down, I was so thrilled. Me?? She's calling little ol' me??

She listened patiently and, even though she was totally booked that week, reassured me that she'd fit me in. First thing on Monday, her assistant called. Wednesday morning, she greeted me with a hug. By the end of the day, she had completely taken care of me. I saw three different doctors that day, had all of my remaining tests scheduled, as well as a date for surgery.

Two weeks later, she held my hand and sang to me, "Because I knew you, I have been changed for good," as they gave me the anesthesia. I know without question that her presence in my life has changed me for the better. And as I fell sleep, I thought of that email and how a good honest piece of writing can change lives. Well, maybe just one life in my case. That email also taught me that I can and should make changes in my healthcare if I don't like how I'm being treated. In the past, I'd been somewhat complacent, even staying with a doctor though I didn't truly trust them. It's not going to happen again.

I go into this school year with a renewed appreciation of what I teach, knowing from personal experience, that you never know when something as simple as a carefully written email could save your life.

CancerGirl is born

I came up with my superhero alter ego CancerGirl after a meltdown not quite a week after my diagnosis. I was alone, confused, and overwhelmed with the amount of information I was trying to learn about my cancer, doctors that had yet to return my phone calls (oncologist, genetic counselor, surgeon), and the insurance company's paper maze of coverage. I was trying to read one of the myriad medical books I had purchased and was unable to concentrate on anything but the tumor that I could nearly feel getting larger while I waited on everybody to decide when my disease was convenient for them. I finally decided that I needed a new approach. My lifetime of patience while holding on the phone with my insurance company and self-sacrificing politeness when dealing with receptionists and doctors had come to an end. No longer would I give a half-hearted yet pleasant, "Oh okay, sure, that's fine," when faced with someone who wanted me to wait days to pick up my medical records. No longer would I not ask questions because the doctor seemed rushed and other patients were waiting. No longer would I feel that I was fine with being brushed aside. That old me, too polite to voice her concerns and too patient to demand efficient service was gone. In her place was CancerGirl: a superhero unafraid of speaking her mind, demanding her rights, and getting results. A woman who took control of her disease and did not shy away from any fight.
Who knows why I needed a kick in the ass from a kick-ass superhero to feel that I could handle my situation? I'm sure Freud would have a field day with a breast cancer superhero alter ego. But I don't think it matters who or what helped me stop feeling like a victim. Everyone at some point in their lives feels like a damsel in distress. This damsel is just happy that her superhero swooped down and saved her so quickly after cancer tied her to the train tracks.