I apologize that I never announced this one. I planned to have a 2nd annual contest. I've had this book The Stench of Honolulu by Jack Handey of Saturday Night Live fame sitting on my desk for months. Remember his "Deep Thoughts" series? Here's one I live by:
"The first thing was, I learned to forgive myself. Then, I told myself, "Go ahead and do whatever you want, it's okay by me."
(BTW, this is where you can just skip to the hair update if you're really not interested in anything else I have to say) My friend Martha (the very same Martha who bought me the Anchorman DVD I gave as a prize in the first annual I Had a Boob Once contest because I already owned it) gifted me this book after I'd already bought it on my Kindle. And here was the crazy thing, folks: she bought it on the very same day that I bought it on my kindle! Wowee, right? And when Amazon sent it to me, they sent it without a gift card, which could be Amazon's fault or it could be Martha's ...I'm just sayin Martha. So when I got it, I was very confused. I called Amazon and they were of no help. Together,the dumb person at Amazon and I surmised that Amazon had accidentally sent me the book twice, once virtually and once hard copy, so I should send the hard copy back. Fortunately, I am a lazy person and the book continued to sit on my desk for a couple of weeks until I actually talked with Martha and she asked, "Did you ever get the Jack Handey book I sent you?" and then we laughed until we cried and it was the best moment I'd had since the Star Wars original release in 1977 (there's no fact checker here so don't get on my case about the date). So, I finally decided to have contest #2 to give away this gripping adventure tale for the ages, which includes prose passages that make you go hmmm, such as this one:
I pretended to be perfectly relaxed and even interested in what Doctor Ponzari was saying. Then I threw my drink in his face. He screamed in pain as I ran to the door. It was locked. Desperately I fumbled at the latch, until finally I got it open. "This is the stupidest party I've ever been to!" I shouted as I ran out into the night. But then, instead of having an actual contest because as I stated earlier I'm lazy, I decided to just give this book away to my my friend and loyal commenter, Kevin!!!!! I decided Kevin deserved this honor: a) because he commented on every post I wrote through my treatment AND always made me laugh (if you haven't read his comments I urge you to go back and read every one of them right now because they are better than my blogs and I know you are looking for something to do), and b) his mind works similar to that of Jack Handey with a little bit of Lucille Ball or Liza Minelli rolled in...take your pick. So let's all congratulate and celebrate Kevin today!! Here he is in action when I met him back in the eighties. Go Kevin!
If you have any special words you'd like to share with him, please put them in the comments. And now, finally, what you've really been waiting for: a hair update (did I mention that this whole hair growing back thing is very awkward?) Now i'm entering the heat miser phase:
A woman on the other end said , " Can you come back in this Thursday, just so we can take some more pictures? Don't worry about it, though. It's probably nothing."
I hung up the phone slightly rattled, as I'd never received a call back after a mammogram before. Still, one tends to go with what one has already experienced. And the majority of my health scares (except for a little white pimple on my nose that wouldn't go away and turned out to be a basal cell carcinoma) had turned out to be nothing. At 1pm, I picked my boys up from an early release day at school and took them to the movies, where we documented the moment in a photo booth. I definitely remember feeling a little spooked at the theater. Still, I really had no concept of awaited me just around the corner.
Yesterday I dug back into an old journal to see if I had written about this time. Here's what I found:
"One week and the world has done a sort of tilt on me. A simple test, a mammogram, the day before my birthday. Well, who planned that, you might ask. I did. Bad plan. Bad, bad plan. On my birthday, I got a call. Calcifications, she said. "Probably nothing but want to take more pictures." On Thursday, I'm back in the one-sized fits all pink robe that barely covers my upper body nakedness, waiting in a room with a bunch of strangers, my comrades in their matching pink robes watching a TV show called "Steve." Steve is wearing tall, springy shoes on his feet - some sort of new fitness device. Another man is also wearing these strange shoes and is bouncing around rhythmically in them, doing something akin to aerobics on steroids. They are jumping , laughing, looking ridiculous, when a woman calls my name.
I follow her into the mammography room. I stand before the machine and the nurse begins contorting my boobs and arms into all sort of unnatural positions, like a Gumby toy. When we're done, I thank the woman (what I am thanking her for? I think. But it's automatic).
I'm back out in the waiting room now. Even though it's just been a few minutes, some of the faces have changed. New soldiers in the ranks. This time I don't watch TV. This time I dig through the bounty of outdated magazines on the table for something recent and find the October issue of Vogue. Other women get called and disappear behind the door. For some, it's judgement day; others will never even remember being here. A blip.
A woman I remember seeing and smiling at during the Steve show comes back from the abyss and takes a seat again in the waiting room. She's my soul mate for the moment, the two of us waiting for the radiologist to read our results while others simply come and go, onto the next thing on their to-do list today. The door, the gateway, opens again. A nurse calls my soul mate, who stands up and walks toward her.
"You can get dressed and go," the nurse says. The woman smiles, then escapes.
For some reason, this makes me think the odds are not in my favor. She got off, so I won't. I text my husband, "This waiting is getting to me. " I try to watch TV again. And then I'm called. The nurse does not say "You can go now." Instead I pass through the gateway into the first circle of hell--a small, sparsely furnished room that smells like antiseptic where I'm left to wait. Shit.
The radiologist appears with a young a man, a medical student. I know the radiologist. Her name is Betsy. She looks a little bit like Big Bird. I'd interviewed her before, many years ago, for the newsletter when I was still a Lahey rookie. She tells me about the findings, microcalcifications that look suspicious. Could be a sign of early cancer. Or not. She explains about the biopsy. How it's done
I ask lots of questions.
"We've got a journalist here," Betsy jokes to the medical student. He's still smiling. I wonder what he's thinking.
This is where the entry ends. Fast forward through biopsies, genetic testing, MRIs. It's before my surgery and I'm sitting in a room with a doctor at Lahey who is telling me what I might expect moving forward. Surgery. Chemo. Radiation. Maybe Herceptin.
It's just a year of your life, she says.
And so here I sit, one year later. I'm somewhere between who I was in that movie theater a year ago, and who I want to be. Mostly I'm stunned how quickly a year can pass.
My friend Rachel used to joke with me when I complained about my birthday, about getting older: "It's better than the alternative." A sentiment that has never felt more true.
Yet how does one celebrate such a momentous birthday? I'm not really sure, but I think I'm going to stretch it out for a while. It may involve a massage, a new wardrobe, Anchorman 2, and a 2nd annual I had a Boob Once contest. I'll keep you posted. It will involve starting Tamoxifen,
When I was 11, I wrote my father a b'day card with a poem, or rather rhyme, inside.
"51 and still having fun," it read.
I must have been very proud of that card to still remember it all these years later. So, leveraging that complex rhyming structure, I write myself a similar "card" today:
Remember this anxious person?
I can't believe I'm now on the other side of all this.Today I finished the last of the three big hurdles:
Surgery. Chemo. Radiation.
To celebrate, I hoped to post a video clip of Will Ferrell in the beginning of Kicking and Screaming. He's got big hair circa 1970 and wears a thick sweatband and short shorts. He's jumping over these hurdles and he's knocking every one of them down, but he charges on, however awkward and idiotic he looks, which I thought was a good metaphor for my experience.
But since I couldn't find that clip, I'm posting this other gripping excerpt from the same movie. (It reminds me of my husband on a bad day in Starbucks ).
So what now? I'm told that people tend to have a hard time after treatment...that the feeling is like walking off the side of a cliff and free falling. A friend who'd had that experience sent me the book After Breast Cancer by Hester Hill Schnipper (fun name to say five times fast). Looks good, but haven't read it yet because I'm not totally done. I still have a mini-hurdle called Herceptin to finish. Herceptin isn't a bad deal, however. Herceptin has no side effects. Herceptin is like a heat seeking missile targeting those bad ass HER2 positive cancer cells (thanks to my 7 year old for helping me think of my treatments in weaponry and video game terms).
Herceptin is also a major breakthrough, and hopefully works well. Herceptin means I remain safe in the womb a little bit longer, going to Oncology every three weeks, which to be honest, is kind of nice. Particularly if my treatments are on Thursdays, when Lauren* the massage therapist is there to rub my feet. Last time I also met Ginger*, a 60-something-looking volunteer manning the beverage cart. She struck up a conversation with me, asking me about my family, my cancer, my work. I told her I was a writer and she seemed genuinely interested. She asked me what I'd written, if and where I'd been published, and I wasn't hating talking about any of this, ya know what I mean writer friends? I told her I had nine more radiation treatments to go, but I'd be back here, to Oncology, for a good few months. She said, "Well, I'll be here. I'm 83..." (this is where I cut her off, saying, "No way Ginger! You look 20 years younger!") and I have all sorts of aches and pains, but I'm healthy. I come here to volunteer, but also to keep things in perspective."
Yeah, me too.
*Names are made up not to protect the innocent but because I'm still working on my name remembering skills...she did look like Ginger from Gilligan's Island, however
This morning, when my nurse handed me my radiation discharge papers, she offered me the same survivor poem that she gave me the day of the breakdown/breakthrough. I reminded her that I already had one
"Maybe you want another for your car?" She asked.
"One's good," I said.
With or without a poem, I know things are different now. But I fear anything I write right now
about how I've changed and what I've learned thus far will make me sound like a cliche. Like the skin around my right breast, everything is still so raw (ick. sorry.). And as any writer worth her own salt knows, best not to poke around in there too much when the experience is still so very fresh.
But one thing I will say is this: I'm high on life today. I love everybody and everything. The squirrels in my backyard: I love you guys! The slow drivers on route 3: I love you too! My family and friends and old ladies on the street, and the color of the leaves, and the lady who sold me my muffin this morning (although she was kind of gloomy but I love her anyway). I love the radiator in my living room, the person who invented hydrocortisone cream, and my shoes.
I'm so very joyful that someone really needs to smack me.
xo
Although I've had many people ask me in person 'what is radiation actually like?' I have to yet write about it any sort of detail beyond my radiation "breakthrough."
Thankfully, only 4 more days remain...and Wednesday was my last day of whole boob radiation.* The next few days they will target only my surgical scar in a process called a boost, and the rest of my skin will be spared (although I'm told my skin will continue to disintegrate for about five to ten days, as the effects are cumulative). I'm very thankful that the whole boob radiation part is over because my skin is pretty fried right now, particularly the skin under my right armpit, which is the color of your worst sunburn minus any pleasant day at the beach beforehand. I'm tempted to walk around with my right arm up in the air at all times but then people might keep calling on me for answers and I'd never get any work done.
*whole boob radiation is NOT the technical term.
So before these days are completely behind me (yay!) I've put together this Layperson's Guide for anyone needing breast radiation. As for them other body parts, ask your doctor:
When you arrive stamp your parking ticket first, and do it correctly. This is important because otherwise you will get stuck at the parking gate trying to get out and looking like an idiot.
Then change into your rose-pink, thankfully easy-to tie-gown (some of those hospital gowns are a bitch!). Say sorry every time the changing room door slams shut behind you because it's very loud and everyone in the waiting area will turn around and look at you.
Join those in the waiting room watching The Queen Latifah show. Say a quick "Good Morning" to anyone you make eye contact with. Talk to the woman sitting next to you about her horrible hot flashes and feel thankful you do not yet have hot flashes. Overhear the conversation a few chairs over between the young man escorting his elderly father (who reminds you of your own father) and a middle-aged woman. Hear the young man say, "Yes, I bring him here every day. It's hard, but he was a really good father to me..." and feel thankful, again, for good human beings.
When your name is called, walk with the technician down to the radiation room. Enter the darkened room and witness a machine that resembles a cross between some sort of CT scan machine, and the table aliens place you on when you are abducted. Have the technician ask you to lie down on the "couch" and stare at the metal "couch" in front of you thinking "that ain't no f'ing couch."
Couch.
Not a couch (and not me)
Do what you're told. Lie down on the "couch". Slip your right arm out of your robe to let it all hang out. Lie back and put your arms up above your head. Keep your head turned toward the left.
Surrender as the technicians move the couch around with a remote control and write on your chest and boob with a permanent marker. Listen as they speak in numbers: 92, 75, 23, (Hike!) Wonder why they became radiation technicians. Was it because they loved science? Or math? Or writing on bodies with permanent marker? Or football? Debate asking them, but don't so you can get out of here faster.
When the machine is ready and they leave the room, try to imagine you are lying on the beach. Then notice the image in the ceiling panel above you is of an icy looking mountain. This is the scene you will see every day for six and a half weeks. Ask them to turn off the overhead fan and wish you had gotten the room with the beach view instead.
Brrrr....
Listen for the beeping noise that tells you radiation is about to begin. Notice the red laser light across the wall and ceiling and across your boob. Think of Dr. Evil and how you'd like to watch Austin Powers again some time. Listen for the buzzing noise to start, and then maybe 30 or seconds or so later, go off.
After two "treatments" like this, prepare mentally for the bolus. The first time they mention that they will put a "bolus" on your boob to protect the skin, recall your 10th grade science teacher Mrs. Lobdell and imagine they are going to put a mass of chewed up food on your body.
Feel thankful when they pull out a sheet of fake skin with the consistency of one of those Boo Boo Buddy ice packs. Gasp when they put it on your body as it's soooo cold. Accept their apologies and check with them every appointment thereafter to make sure they wrap it in a warm blanket before placing on your skin. They do. (actually, not all breast cancer patients get the bolus. I grew to like it. Found it soothing on the skin....)
After two zaps with the bolus on (did I mention that you really don't feel anything during radiation - except arm fatigue some days), wait for the last buzz to announce the end of your session and then put your arms down. Wait for the technicians to come back in and lower "the couch" and then discreetly pull your gown back up over your right arm and around your body. Thank the technicians and say "see you tomorrow." Wish you could better remember their names. Try to look at the blonde woman's name tag but it's turned the other way. It's been six weeks. You should know the names of these good people. Note to yourself to try again tomorrow. Note to get better at remembering names, period.
Go home and smear Gene's Cream or Aquaphor or hydrocortisone cream over your damaged skin. The next morning, remember to wash the permanent marker off or they will think you don't shower (some days, you don't). Try not to accidentally shave your right armpit. I did it once while in a trance, didn't die, but bad idea as it increases your risk of infection. Put deodorant on your left armpit, corn starch on the right, but be very careful with the corn starch! It can explode all over your bathroom and cleaning it up is a bitch. Put on your comfy clothes, including the fashionable Genie Bra you bought at Bed, Bath and Beyond (Sorry, no more underwire ladies...and toward the end you will likely be wearing no bra), a cotton t-shirt and a baseball cap and go do it all over again the next day, and the next, and the next, until it's over.
And yes, my friends, it will be over. Sooner than you think.
p.s.
I wrote this post before I went to my first boosting appointment yesterday. The technicians went crazy drawing football plays on my skin. I finally asked them, So what brings one to this line of work? Were you math or science people in high school? Or into football? (They thought my football joke was funny - then showed me a whole notebook of drawings that looked like football plays, now to include my own ) Anyway, the overall response was physics, which I got a D in senior year in high school (my only D ever might I add), which means I'll never be a radiation tech. But I'm extremely thankful they exist.
An open letter to the student driver who was in front of me on Wednesday: Dear Student Driver, Yes, I wanted to kill you. You were in front of me on the way to my radiation appointment. Perhaps you remember? That was me, tailgating your nervous novice ass. You were going anywhere from 10 to 15 miles per hour, and I was in a rush to get to my radiation appointment, running late again. Of course, it wasn't your fault what happened. You were just doing your best, so I apologize for running you off the road (thank you for finally pulling over. That was a smart driving move on your part! ).
The things is, I'm losing my mind right now. Until recently, I was the woman who, like the cocky little engine that could, would take on a lot. Even if my plate was full, I'd say Bring it On! to one more freelance writing job, or social engagement, or volunteer commitment. And this worked, sort of, up until this past Wednesday, when my little engine finally crashed and burned. It happened in the nurse's office, after my 13th radiation appointment out of 33 1/2. Oh what a nice radiation nurse I have! She's so kind and attentive it makes me a little bit uncomfortable, but that's better than the opposite, don't you agree student driver? She said, "How are you doing?" and I started to tear up just a little and then she said, "Can I hug you?" and in my mind I was shouting "NO NO NO!" (see Blanket of Luv entry to understand my intimacy threshold), but I said, OK and she hugged me and I was a puddle. "What going on?" She asked.
"I'm completely overwhelmed," I managed to get out, between sobs."I can't manage my life anymore. I can't get my work done, and get here on time every day and take care of the kids. I have no time to work out, or take care of myself. I can't remember things like I used to; I completely spaced on an important work call this morning and didn't even think to look at my calendar. I tried to break into my neighbors car recently while she was in there, and on my way here, I ran a woman off the road (that's you!). I think I'm falling apart." My nice nurse explained that this happens to a lot of high-functioning women who do radiation after chemo. "You're overwhelmed and you're also likely experiencing some symptoms of chemo brain right now but you're still trying to do everything you could do before. You need to find ways to compensate." I nodded. Yep. I'd heard this before from my dear friend Dr. Robin, a radiation oncologist. In those 3 weeks between my chemo treatments, Robin and I took many walks together. She'd told me about the high-functioning women she saw in her practice who fell apart mentally during radiation because they continued to work at full speed ahead through their entire breast cancer treatment. I remember thinking then, "That won't happen to me. I only work part time. I am not an idiot like those women!" Turns out, I amtotally that idiot. I work a demanding part-time job on top of my already demanding full time job as a parent, not to mention other things like mentor and teach creative writing students. Do you have kids and a job, student driver? Let's say you do. Now imagine losing your multi-tasking mojo. You'd be feeling frustrated and aggressive too, possibly enough to run someone off the road, maybe? Anyway, the nurse and I talked about ways I could compensate for my losses, such as writing things down, which I do anyway, but writing things down everywhere on sticky notes so if I forget to look at what I've written down it's right there in front of my face. We talked about the importance of taking daily walks to clear my head and not sitting down to work at my computer first thing in the morning (which i'm doing right now. Bad Amy). We talked about asking for help, again. We also changed my radiation appointment time to 9am every day instead of 11:30am, so I would have the rest of the morning and early afternoon without interruption until I had to pick my kids up from school. Then she said, "I want to get something for you," and left the room. She returned with a little laminated card in her hand. "I want to read you a poem," she said. In my mind I again shouted, "NO! NO! Please NO!" but my always-so-polite head nodded "OK cool," and she read me a poem called "I am a Cancer Survivor" and I wanted to barf. I didn't know how to respond so I said, " Oh, Wow." Then she handed the poem to me. I didn't want it, but I put in my pocket and brought it home with me. One line reads, "And although I may get down and worried at times, I forge ahead each day and take better care of myself." That's the part I've gotta remember; the part I would underline if the card wasn't friggin laminated. Oh, and I suppose the part about being a breast cancer survivor is important, too. But right now I still feel more a cancer patient than a survivor. And I'm not sure I'm mentally ready to belong to the breast cancer survivor club - although I've apparently already paid the dues. Are you still with me, student driver? Because there's just a little more. After the nurse finished her job of triggering my nervous breakdown, I heard the sound of high heels coming down the radiation hallway and I knew what that meant: my doc had arrived! My radiation oncologist is brilliant and barbie-doll beautiful, always dressed and coiffed to the nines, which can be a bit hard on a cancer patient who comes in sweats and whose hair currently looks like Curly's from the Three Stooges, but I digress.
My radiation oncologist
Curly
Me
She examined my boob and then mentioned that the nurse had filled her in on my cognitive difficulties. "Can you give me an example of one of these time you felt very confused?" So I shared with her the story of trying to break into my neighbor's car with my neighbor in it. How in some sort of mental fog I didn't recognize the car as my neighbor's car and convinced myself it was my friend's car from which I was going to retrieve a diaper bag, and that I had accidentally turned on said car with the keys in my hand (all of this seems ridiculous to me now), and I went so far as to try to put the key in the lock without noticing that my neighbor was in there, talking on her cell phone. It's a funny story, really, kind of, or so I previously thought. "Well, we could do a brain scan just to rule out anything serious going on up there." she said. Yikes. I shook my head. "No more scans please." I told her I'd rather just see how I do with the positive changes I was about to implement. She agreed and I left feeling a little bit lighter than when I'd arrived (although I was now slightly worried about a brain tumor...) Anyway, thanks for reading all this, student driver. I do believe in karma and I think your brief presence in my life last Wednesday was a sign for me-- you were trying to tell me to slow down. I get it now. You are a wise, wise woman. P.S. One request: please, if you can avoid driving on route 3 from Arlington to Burlington between the hours of 8am and 9am on Mondays through Friday mornings, that would be awesome. Many thanks in advance!
Wow. I just counted and It's been exactly 51 days since my last blog post on July 4th. Why so quiet you may ask?
In the beginning, I was just tired and feeling crappy. Six chemo treatments will do that to you. (For those of you who have been following me along this journey, my voice came back pretty quickly after the sixth chemo treatment, probably a disappointment to my family but a welcome development for me.) I started feeling a lot better about three weeks out, right about the time that the boys were done with camp and it was time to launch Camp Mama. I had high hopes.
"We're going to have craft time, screen time, and sports time," I announced. "Just like a real camp!"
What we really had was mama working half the day and the kids playing Wii and Ethan asking, "When's craft time, mama?" So I threw in some field trips for good measure.
Then, last week , I went away to the Vermont College of Fine Arts for a writing conference, also known as Camp Amy. You may have seen the pictures on Facebook. It was a wonderful, soulful experience, where I met new writer kin and immersed myself in the literary life for seven days. My kind of fun. And then, last Sunday, I returned home, to Camp Mama.
Poor, defenseless me, this week.
You might be able to imagine where this is going. Let's just say it was a tough week. Reentry after a vacation (especially a solo one) is difficult at best. But I think what the week in Vermont did for me was remind me that I was not put here on earth just to serve others...but also myself. It tore down all my defenses. And so it's taken me about a week to build them back up, to readjust to the demands of two little boys and one employer--a nice, flexible employer I'll add--but still, I had a lot of catching up to do. I got so bogged down in trying to juggle everything that I spaced on my Herceptin appointment yesterday (that's the non-chemo targeted therapy I'm supposed to get every 3 weeks until next March). I was enjoying myself at a friend's swimming pool yesterday when the nurse called looking for me. First time I'd done that, but I guess when you're this overwhelmed AND you're enjoying life after feeling crappy for months AND you're brain is already at a disadvantage due to chemo, mistakes happen.
I also noticed this week that my hair is growing back. I'd say about a half inch all around (although I'm terrible with measurements). Currently, it's a fine fuzz and black, rather than the brownish-auburn I used to sport. No gray that I can see yet. I've heard from other survivors that sometimes the way it initially grows back is not the way it will stay. That if you've had straight hair it might grow back curly, or vice versa. I'm not sure what to expect, but I hope it doesn't grow back like this (WARNING - disturbing but hilarious. Do not watch this video with the kiddies).
I have to add that being bald has grown on me. Before cancer, I'd devoted way too much of my life and my money to my hair. I was always looking for the perfect cut, the perfect hairdresser, the perfect product to tame my thick, wavy locks into submission. But now I'm spoiled. It's been soooo easy being bald. A quick shampoo, throw on a wig or a scarf (a pre-tied one as I never learned to master the art of scarf tying...it was so frustrating that I actually cried over it once) and you're done. Unlike some other bald women, however, I never really became comfortable flaunting my baldness. Twice recently I've run into bald women while shopping. Both times I was wearing my fake scarf and they were bald as pool balls and I smiled at them, only to be ignored. Which makes me wonder if there is discrimination in the cancer/bald world...but I digress.
Only this week was I brave enough to flaunt it. We were at the YMCA. I'd brought my swim suit so I could swim with the kids after their lessons. I also brought the hot pink bathing cap I'd purchased to protect my head from the sun while swimming outside this summer. I hate this cap. Putting it on is like adhering a condom (I imagine) to my head. So when I realized we'd be swimming inside, I decided to finally go without it. We were in the locker room, and when Jonas noticed I was walking around without a pink head, he said, "Put your cap on mama."
"Why? I don't want to wear it."
"I want to you to wear it," Jonas said. "Put it on."
"Why?" I asked again.
"Some people...kids might think you look funny," Ethan said.
I realized for the first time that my kids were embarrassed by my baldness. This was likely because I'd never ventured outside the house without something covering it up.
"I don't care what other people think," I said, sort of believing myself.
"Put your cap on mama!" Jonas whined.
I put it on.
But as we finished preparing for the pool, I kept complaining. "This really hurts my head guys,"...."I don't really want to wear it." Until finally Jonas said, "OK mama, don't wear it."
So I didn't.
And while I'm pretty sure my kids didn't notice the people who glanced at me in the pool, or the little girl who blatantly stared at me, twisting her neck as she swam by, I did. But really, I didn't care very much. It felt freeing. And I hoped it was a positive message for my boys (and others, perhaps) - showing them that it didn't matter if you were bald, and that I didn't care, for that moment and in that place, at least, what others thought. Every so often I'd lean my head backwards into the water, enjoying its gentle, warm caress on my almost-bare skin, and smile.
This makes me smile too. If you haven't seen it yet, this video is by the talented Alastair Moock and his daughter, who has leukemia, singing the praises of being bald. Share it with anyone one you know who might benefit from it.
As for moving forward, I start radiation the day after labor day. Should be a lot easier than chemo. Lots of people ask "are you in remission now?" My doc says, and I stress the quotes, here, that I'm "cured." But no one really knows or can say for sure. All I know is that I'm on the other side, for now, from the worst of it. The scariest parts. And, as the great James Brown once said, "I feel good." What's better than that?
Yesterday I finished chemotherapy! Every time I told someone I was finishing my treatment on July 3rd (Jonas's birthday...same day six years ago I immediately fell in love with the 2nd child I didn't think I wanted (life is full of surprises), the person would say, "Well that's a real independence day, huh?" Or "Independence day, indeed." No exaggeration. I'd just wait two or three beats and the person to whom I was speaking filled in the blank. So I named this blog for you, people!
While I'm not looking forward to the next 7 to 10 days as they will be tiring and everything except cream cheese will taste like crap, I do feel like singing right now- this song in particular:
In about four weeks, I should start feeling a bit more like my normal self. My hair will start growing back (I'm not sure I want it to, actually...It's easy being bald) and I will have to begin shaving all them parts I haven't had to shave in months. Interestingly, I did not lose my eyebrows or lashes, and my oncologist says at this point I probably won't. My oncologist (who did I mention I adore? Dr. Natarajan at Lahey) also says I should really be feeling better in about six weeks and that my voice should come back, just in time for my writing conference with Dinty Moore at the Vermont College of Fine Arts! (when I meet him I will find out if he was named after the soup. Unless someone knows and can clarify this for me...) Last year I almost went to this same conference but talked myself out of it because I was worried about money and feeling guilty about leaving my family for a week. This year, I have a second chance to go, with a little scholarship $ from the conference as well, and that's no longer something to snub one's nose at, eh?
Speaking of things I look forward to, here's the bucket list I made a few weeks ago:
See Billy Joel in concert. What can I say? I'm a native New Yorker. If he retires from concerts before I get to see him (as I read somewhere recently) , he's on my shit list. Actually he was on my shit list once before when I met him (stalked him) in the Hamptons and he didn't buy me chocolate when he had the opportunity, although I'm over it. See pic.
Travel more. Get to Israel already, the land for which I was supposedly named (Ami means 'my country' in Hebrew according to my dad) and where there are many relatives I have yet to meet. Money and fear have always been the issues. While money is simply a reality, fear doesn't have to be anymore if I don't let it.
Get a dog. Not immediately, but this must happen. I talked Ben into it recently, and then when he agreed, talked him out of it. For now. It's a responsibility I'm not yet ready to consider with those other responsibilities called two boys...but soon, perhaps. Dogs really do make me happy when they are not shitting on the floor or begging to go out at 5am. Although maybe that would help with time management...
Get a handle on time management. Did you see that coming? I want to live a more fulfilling life moving forward - and set a better example for my kids. I want time to read more, and write more. -particularly the book I've been trying to write for 15 years, and all those unwritten essays. I want to be less stressed. I think a huge part of this is better time management. So if you know a time mgmt coach who can whip my ass into shape, let me know. A 2-for-1 deal with the hubby would be great.
Take piano lessons again. I quit when I was ten or eleven...right after my first recital where I played, what else? Billy Joel's Piano Man. This was right before my evil Jewish girl-gang days. Sigh. My apologies to anyone reading this who knew me then and thought I was a little jerk. I was.
I realize these are somewhat high aspirations and I may simply fall back into my old patterns, but one can hope. I also hope to never again take the simple gift of good health for granted. I don't want to forget how wonderful it is just to feel good today. For things to taste good. To enjoy a good cup of coffee. A good bowl of ice cream. To not feel so tired and sick you can't even sort a pile of laundry. Although maybe that's a perk...
A lot of friends have asked, what happens now? Are you done? Are you cured? No, I'm not done. This journey is kinda long. Surgery is done. Chemo is done. As soon as I return from the writing conference in mid-August, I start radiation every day Monday - Friday for six and a half weeks. I'm told radiation is typically a cakewalk compared to chemo. And although it's every day, it's about 15 minutes --you're in, you're out. After that I will start Tamoxifin, a pill. Estrogen therapy. And I will continue to get one drug called Herceptin intravenously every three weeks (I'd been getting it with my chemo drugs already) until next March--one year from when I started chemo. Fortunately herceptin is not a chemo drug, but a targeted therapy for the kind of cells identified in my biopsy and does not really have side effects.
As for Are you cured? Who can say for sure. I was given chemo as what they call adjuvant therapy - there was no sign of cancer spread on my scans, so it was just in case. So technically, I should be "cured." My doctor uses the word cured, but she also says there are no guarantees. For the first year, I will have blood tests and scans about every 3-4 months to see how things look; to make sure nothing changes.
People have called me brave during this process, which is nice to hear, but what else can you do? You just do it, ya know? I know some of you reading this have already lived this experience. Knowing you could be brave and survive inspired me to be brave as well. I hope everyone else reading this never has to go through cancer treatment, but if you do, here's what I recommend:
Get yourself a great therapist with a wonderful sense of humor. Surround yourself with an incredible tribe of friends, acquaintances and supporters -- both online and in the real world. Let yourself be surprised by who rises to the occasion, and don't beat yourself up about who may not, for whatever reasons. Maybe someone will shave your head for you, or even walk in your honor this year in the Avon Breast Cancer Walk ( go Sara Sellitti)! In these ways, I've been blown away, and blessed. If you can, get yourself an awesome moldy green happy place blanket, and as many Will Ferrell movies as possible, and I just know you'll be OK.
Yes, I am capable of more than I ever thought possible. It wasn't that long ago when I was quivering in my boots about surgery and chemo. And now they are both behind me.
But I couldn't have done it without all your humor, love and support. Thank you thank you thank you everyone...now let's all go celebrate Independence Day Indeed!
The other night my husband told me I was hostile. I told him he was right.
Blame the chemo.
Blame the bad taste in my mouth and that everything tastes awful (except for everything you kind people bring to me...)
Blame my inability to yell at the top of my lungs.
Blame trying to manage fatigue while managing two rambunctious (that's putting it kindly) children.
Blame my hormones (as I know the men will immediately do, anyway).
I have taken my hostility out not just on my family but on members of the local academic community. I called the school earlier this week after the latest robo-call telling me that Ethan was absent when he wasn't.
"You know that the kids are late every day, right? You know that I'm going through chemo (poor me)? Stop the $!@% robo calls."
No, I didn't curse. But I wanted to. The woman tried to explain herself...there wasn't enough time to switch the absence to a tardy before the terminator was scheduled to phone home...something like that. I responded and although I don't recall what I was saying, she hung up on me mid-sentence. Bitch.
So I emailed Ethan's teacher and kindly asked if she could just mark him tardy every day, not absent, and that I'd call if he were absent. They probably think I'm nuts, asking to mark my kids late every day (although he is, so what's the difference?) I also bitched via email because they sent home a huge pile of the wrong kids' work from this year. But you see, I can't stand the paper! Don't send me any more #%! paper! I already put most of Ethan's first grade class work into recycling (which Ben got mad at me for and pulled it out), and now I'm forced to sort through all of Eddie's paperwork before realizing it's Eddie's?! NOOOOOOOOO...........
I wrote the teacher another email: "Would you like me to send Eddie's classwork back in the folder, or put it in recycling?"
I guess that was a little hostile.
Does anyone know if this is normal behavior toward the end of chemo? I'm usually a nice, well-mannered, patient person. I think. Now, with 13 days to go until my LAST treatment, I'm this guy (without the drums):
Three weeks from today is Jonas's SIXTH birthday. Not that I'm counting.
Cliche alert: Where did the time go? Blink of an eye?
We watched this video the other night. It's one of my favorite Ethan & Jonas videos of all time. Ethan is trying to teach Jonas how to use a walkie talkie. I miss these little guys...
Things are getting a little funky around here, so please allow
me to get you up to speed.
Self-Portrait After 4 Chemo Treatments
A little more than two weeks ago, I went for my fourth (out
of six) chemotherapy treatments. A few days after, my voice started getting a
little hoarse. Occasionally, when I had to cough, my cough would get trapped in
my throat and I’d become Maggie the sea lion (below), a sound alarming not only to me,
but to the person with whom I might be talking at the time. I’d put my hand up
in the universal sign of no problem and
then in a hoarse voice confirm, “I’m Ok.”
This continued for a week, and then another week…the
hoarseness in particular. When I learned that eight kids in Jonas’s
kindergarten class had strep throat, I finally called the oncology nurse.
“I’m not really all that worried about it,” I said to her, “but
when I learned that (garbled something) kids in my son’s kindergarten class
have strep, and I’m having problems with my voice, I thought I should call.”
“What did you say?” she asked. “Something about strep?”
“(Garbled something) in my son’s class have strep,” I tried
to say again.
“I’m still not getting it,” she said.
I opened my mouth to attempt to say the word “eight” once
more and still, nothing doing. I simply could not say that number between 7 and
9.
“Ok, I can definitely hear you are having voice problems,”
she said. After asking me about fevers and other symptoms I did not have, she
added, “I don’t really think you have strep. This doesn’t seem like strep.”
When I asked ‘what do you think this is’ and ‘have you seen
this before with chemo?’ she replied, perplexed, “Well, No. Not exactly”
So she called my oncologist and called me back. Guess what?
The doctor was perplexed too (never a good sign). Together they decided I
should go see an ear, nose and throat specialist, which I did two days later.
And here’s where it gets more interesting. The doctor, who
was very nice, asked if she could stick a weird looking device with a little
camera on the end up my nose to look at my vocal chords. The old Amy would have
freaked. You want to stick that up my
nose?Are you you f’ing shitting me?
But seriously, folks, what’s a device stuck up your nose compared with several
breast biopsies, having your whole boob removed and replaced with a bionic
implant, and having chemotherapy pumped into your body through a port inserted
into an artery in your chest? No biggie in my estimates.
“Sure, go for it,” I said.
And, in the end, it really was no biggie. A little
uncomfortable, but quick. She made me say a few things, like “Eeee”…and
then she was done.
“Well,” she said. “I have good news and bad news. The good
news is, you don’t have the things we typically look for first when someone is
having this problem. Cancer or polyps." She paused. "What is happening, however is that your
vocal chords are responding like that of an 80-year-old.”
Excuse me? WTF did you
say?
She went on to explain something called vocal chord bowing,
and she mimicked it using her hands to show me what was going on. “It’s likely caused
by the chemo,” she said, “But I’ve never seen it happen in someone your age.”
Excellent.
She suggested speech therapy, and I suggested not right now,
with everything else going on.
“Do you think it will go away after chemo?” I asked.
“It probably will,” she said (OK, let’s recall that she had
never even seen this before in someone my age, so I wasn’t feeling all that
reassured). “But if not you can do
speech therapy then.”
I went home and immediately googled “vocal cord bowing from chemotherapy.” I found almost nothing. So I googled “vocal cord bowing
treatment,” and I got this
(scroll down to the last entry on the page. Sorry for the graphic photo).
In a nutshell, I now have what is referred to here as “Geriatric
Voice.”
Hence: cockamamy chemo.
In addition, my eyes have been tearing like crazy for about
a week, so I look like I’m crying all the time (despite using the antihistamine
eye drops that my primary care physician recommended – although she seemed somewhat
perplexed as well, as was indicated by the statement “Chemo does weird things.”)
And Saturday night I noticed my right ankle was swollen. This
immediately made me think of my grandmother Yedda (may she rest in peace) whose
most distinctive feature, at least that I can remember, were her very swollen
ankles. This, combined with my geriatric voice problem, did not put me at ease.
When I phoned the oncologist on call, he said, “Is it just
around the ankle?”
I stretched my legs out in front of me for another look. “Yes,
I said. Just the ankle. The calves look the same.”
“Ok,” he said. “If that changes, and if anything else beyond
the ankle looks swollen, you should go to the emergency room. Then it could be
a blood clot. Good night.”
Alright, no, it didn’t happen exactly like that. But that’s
what it felt like, as I was about to go to sleep and how on earth was I
supposed to relax if I had to watch my leg for further swelling or else die in
my sleep from a blood clot?
Cockamamy doctor.
Eventually I did fall asleep, with my right foot raised on a
pillow. (I’m happy to report that the swelling did go down and I'm still alive).
And this Thursday, I have my next round of cockamamy chemo.
What awaits me after #5, I wonder? Cockamamy hair growing out my ears? Or
something worse? Right now I still feel pretty lucky. While annoying, the problems
I’m having right now are manageable. Losing voice? Talk less. So don’t take it
personally if you call and I don’t call you back. Try text or e-mail.
As you can tell, I’m enjoying using using this cockamamy
word. As a kid, I used to hear the term thrown around by my Jewish relatives a
lot (including my parents), but somehow I’d made it to 44-going-on-80 without
ever using it in a sentence before—written or spoken. I actually had no idea
how to spell it when it first returned to my consciousness, and my initial
attempts at searching brought me to this:
Which has virtually nothing to do with the word that I can tell, but I do like the song.
And no, it has not escaped me that the word breaks downs
into: “cock-am-amy.” Although I have nothing to really add to that.
It’s actually a fun word to say. Experiment
with it tonight. Throw it into your conversation with your kids, like this:
“Enough of that cockamamy poop talk!” or “Enough smelling your brother’s cockamamy
butt!”
Or with your spouse:
“Will you please put the cockamamy toilet seat down?”
(unless of course you are a man in which case you want to demand that the
cockamamy toilet seat be up)
Or with your pet:
“Did you poop on the cockamamy floor again?!”
I guarantee you’ll enjoy using it and those around you will
look at you like, “WTF are you talking
about?”
Let me know how it goes (via text or e-mail, please).
Here's a true, awkward story: Pretty early after my diagnosis, when I first started this blog, I ran into a friend, not someone I know very well but someone who I like very much, at school pick up. I'll call this friend "S". When S and I saw each other, we hugged. I did not recall who initiated the hug. In fact, I didn't even remember the hug. S did. That evening, she sent me a message on Facebook:
This may sound strange, but I wanted to apologize if I was awkward in our interaction yesterday. So, you know when you've had a night of drinking and the next day you proceed to have flashbacks of the night before that make you think, "Really? Did I do that?" Well, when I think back to your interaction, I have this image of me hugging you. Now, let me preface this by saying, I have nothing against hugs. Hugs are great. Hugs with friends you don't see often and are just getting to know...super awkward, and frankly, uncomfortable. (It ranks up there with strangers who touch a woman's pregnant belly.) So sorry about that---
Let me reiterate: I did not even remember this hug. So I wrote back:
I didn't notice anything at all. What did you do? Did we hug? I don't remember. We didn't make out or anything right? Did you have gas? What happened? I hope you haven't been torturing yourself about this for the past 24 hours.
A couple of days later, I ran into S with her husband, who confirmed, that yes, she tortured herself worrying about our hug for about 24 hours. Maybe she would have done so even if I didn't have cancer. Although if I didn't have cancer, she probably wouldn't have hugged me. Of course, it's not always the other person who initiates the awkwardness. When I was first diagnosed, I struggled with who to tell vs. not to tell. I would find myself on the school playground, talking about mundane things with people while debating in my head whether or not to blurt out "I have breast cancer. That's really all I want to talk about right now so can we stop talking about your kids swim lessons?" Of course I never did that. Well, one time I guess I did. I blurted it out to an acquaintance. We were at the kindergarten open house night in November and she asked the simple-yet-not-so-simple question for me any more, How Are You? so I guess I gave her an update. "Oh," she said. "I'm sorry." She pointed out the purple ribbon pin on her coat. "I have a friend with pancreatic cancer." And so I said I was sorry to her. I can't recall how much I actually talked about the breast cancer, but I didn't think it was much. Truth is, I didn't even really remember the interaction until earlier this week, when our boys had a playdate for the first time. We were talking at her kitchen table and I began a story with, "I don't know if you know I'm going through treatment for breast cancer..." and she reminded me of that evening when I told her. "I think you were still in shock," she said. Uh huh. Shock. What does a person act like when they're in shock? A quick Google search tells me "person may be anxious and excited." I imagined her coming home that evening and telling her husband about the anxious and excited mom who started going on about her breast cancer at kindergarten open house.
Even though I write a blog now called "I had a boob once," I still struggle sometimes with who to tell. Or with how much to talk about it vs. not talk about it. I wonder in my head sometimes as I'm speaking, "Am I talking too much about my cancer?" I imagine the person sitting next to me possibly wanting me to shut up. Of course, I wondered this before I had cancer, too...
I also often notice that when a person starts talking about themselves and their problems, they become uncomfortable and point it out. "Oh enough about me. We should talk about you..." they say. Or here's one: My friend J emailed me shortly after I lost my hair to see how I was doing. She mentioned that her daughter had been throwing up for hours and she felt awkward telling me about how she had held her hair as she vomited.
"Don't worry,"I said, "I'm glad not to have hair if I vomit." And it was the truth.
Look, my motto about all this is: You've got your troubles, I've got mine. Like the song in this award-winning, show-stopping video by Sandy and Harry. Author Jane Roper wrote about this type of awkwardness beautifully on the Huffington Post yesterday. I also really like this piece about what the authors call the "Ring Theory of Kvetching." It's great advice for choosing what to say- and not to say -to whom during a medical crisis. This article circulated on Facebook a while ago, but I held onto as my own reminder. A good read if you haven't read it already.
There's one more thing I want to address, though. And it's kids. Most kids have no filter, as we know. Some of my more awkward moments have been with children. For a while, I wore only a little wintery type cap on my head when I picked my kids up from school. No adults ever asked me about it. But a little girl did. We were standing inside her house as I was dropping Ethan off for a play date. "Why are you wearing a winter hat inside?" I explained that it keeps my head warm. That I was bald. Then I took it off and showed her. She didn't flinch, although she stared at my head for the rest of the visit.
Even more awkward, after I started wearing my wig regularly, Jonas's friend Sam became obsessed with it. The first time he saw me wearing it at pick up, he shrieked in his five-year-old voice, "Your wig is perfect!" Then a few minutes later, "I love your wig!" I appreciated the compliments, but when this continued a few days later at the playground, I started to get a little uncomfortable. I swear I am not exaggerating when I write that he inserted the word "wig" between everything he said. "Can Jonas come over to play? Wig!" "Can you throw me that tennis (WIG) ball?" Fortunately, his obsession with my fake hair and his tourettes have both dissipated recently. I think David Rackoff, a wonderfully funny and talented writer who died of cancer at 47, summed it all up best:
“But here’s the point I want to make about the stuff people say.
Unless someone looks you in the eye and hisses, ‘You fucking asshole,
I can’t wait until you die of this,’ people are really trying their
best. Just like being happy and sad, you will find yourself on both
sides of the equation over your lifetime, either saying or hearing the
wrong thing. Let’s all give each other a pass, shall we?"
Let's all give each other a pass, shall we?
Nuf said.
Kevin's comment on my blog yesterday was so entertaining I thought I'd share it here, as a guest post. And if you didn't read yesterday's post yet, do that first, as all of this will make a lot more sense. Maybe.
Enjoy.
Well done, Amy. I love the positivity.
- The Thesaurus is good, but for my money nothing beats The Chicago Manual of Style. That thick brick of grammar rules is a life-saver.
Not that I've read it, of course (good Lord, the thing weighs like twelve pounds). But then again, neither has anyone else. And, as the person in the office with a writing degree who knows less about grammar than most immigrants but whom others nonetheless turn to with their style questions, its mere presence on my desk allows me to respond confidently to any and all questions.
Confused by the verb agreement for a compound sentence in which the subject is a parenthetical digression connected with or, nor, or but? Simply add a diphthong to the noun in question.
Unsure of the proper way to change a prepositional idiom into a past participle? Just invert the dependent clause that comes before it by using a passive direct object.
Work Colleague (skeptically): . . . Really? . . . Because those answers just sound like a bunch of unrelated words loosely strung together.
Kevin (pointing to his copy of The Chicago Manual of Style): Chicago says so.
Work Colleague (mollified): Good enough for me.
- As for the hot showers: This may be a gender thing. While I don't dislike hot showers, I'm definitely more appreciative of the function rather than the form of that endeavor.
Hot tubs and jacuzzis, on the other hand, you can keep. How anyone can sit in one of those and not feel like they have just been cast in a low-budget, late-night Cinemax feature is beyond me.
- The police officer letting you slide, though, is something I also wholeheartedly endorse. I had a similar experience when I was sixteen. The only difference was:
A.) Eight unopened cases of beer that an older friend of ours had just purchased for us to take on an upcoming spring break trip to Myrtle Beach were stacked in the back-seat of my car.
&
B.) My two traveling companions were very, very high.
Fortunately, I was completely sober. Unfortunately, I was sixteen and incredibly stupid. As in get-out-of-the-car-and-approach-the-police-cruiser stupid (I should also mention that it was nighttime). And, if you know anything about law enforcement, you know that people who get out of their car during a traffic stop are typically beaten about the head and shoulders with a nightstick while simultaneously being tasered multiple times in the throat (as, I might add, they should be).
Amazingly, the officer simply asked me for my license. Even more amazingly (and actually this part begins to fall a bit into the realm of the unbelievable), he did not seem too overly concerned when, after requesting said license, he watched me drop it, reach down to pick it up, come back up without it (wait, what?), and then reach down again to retrieve it. In fact, if I had to hazard a guess as to his feelings at that exact moment, I'd say they probably fell somewhere between baffled sadness (for the future of this once great land) and abject pity.
That he let me go with just a warning about driving with my headlights off (along with a strong recommendation that I head directly home) was nothing short of miraculous.
- And finally, although it's a small matter, I think it's important to give a bit of context to the cat video link that I forwarded to you. Because, for whatever reason, people who forward cat video links are often unfairly judged by our society.
Sure, I own a cat (lots of people do). And occasionally I do write and publish cat-themed poetry for Cat Fancy magazine and its Spanish-language sister publication, Gato de Lujo (it's nothing more than a creative outlet). And yes, if you checked, you'd find that I hold a minority share of stock in a company (Time to Shine, Feline) that designs and manufactures tiny bow ties for male cats (that's just a smart business move).
