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Tuesday, April 23, 2013

A Whole Lot of Judging Going On

I know. This is supposed to be a blog about breast cancer, not controversy. But I feel the need to write about this.

Like many of you, I’ve probably been reading way too many articles and blogs about people’s reactions to the marathon bombings and, in particular, the shelter-in-place, city-wide lockdown on Friday.
And here’s the thing: There’s too much judging going on. I was in Arlington with my family on Friday. Arlington did not have a shelter-in-place in effect; however Arlington is right near Belmont. And Cambridge.  And although sure, I could have taken my children outside to play when they asked to play soccer (which we ended up doing in the living room instead), I didn’t feel safe doing so. The news was unclear; was the second bombing suspect on the road—remember the license plate number that was falsely advertised for a while? Was he wearing a body vest full of explosives like his brother did? Was there a chance he could drive into Arlington, right onto my sleepy little street and blow himself and my whole family up? Highly unlikely, but yes. There was a chance. There’s always a chance, right?

I’m pretty sure all these people who got injured standing near the finish line never thought such a thing could happen to them. They never thought they’d be those people standing in exactly the wrong place at exactly the wrong time. And, speaking from personal experience, I’m also pretty sure that anyone who has ever picked up a ringing telephone only to hear from the young nurse on the other end that their biopsy has come back positive for cancer never thought it would happen to them. But it does. And it can. No one gets outta here alive, anyway.

Fortunately, I don’t walk around every day feeling this way. Worrying that I will get hit by a bus crossing the street or struck by lightning or whatever calamity my worst-case-scenario husband might dream up (although he’s relaxed a bit over the years, thankfully). But if my city is on lockdown and there are men with explosives nearby, I have every right to legitimately feel afraid. Please don’t judge me. And don’t judge my city.

One of the first articles I read that ticked me off was by an official-sounding person from a foreign country who chastised Boston for their overreaction. We are simply giving the terrorists what they want; we are allowing ourselves to be terrorized. I get it. And I’m not writing to argue about this point. But the choices that were made last week and on Friday were made to keep people in this city safe, which in my mind is more important than anything. No?

So basically here’s what I’ve ultimately come to say:

Those of you who feel the need to judge others about what’s already been done and can never be undone, please shut up and move on.

The Management

 p.s. If you're curious, feeling good and still bald....

Thursday, April 11, 2013

Hair Today, Bald Tomorrow (and a photo tribute to my hair)

Yes, the hair is gone. And I have to say that losing my hair was the most emotional part of this whole experience so far. My hair started falling out exactly a week ago, a few hours after I had a wonderful massage by a young woman who upon my request (because who doesn't love a head massage?!) spent some time kneading my scalp and running her fingers through my hair. I shudder to think what her hands may have looked like when she finished.

When I went home and showered, I noticed even more excessive hair strands than usual all around the bath tub. Still, I wasn't sure. But by Saturday, I knew. I began wearing a hat on my head as I could no longer control what my hair looked like and because I thought it might keep the remaining pieces in longer. Although I was feeling freakish ( I don't think I actually looked freakish, but this experience of having your hair take leave of your head after 44 years is quite unsettling), I managed to join my family at the Harlem Globetrotters show and take the boys to a birthday party. By Sunday, I felt simply too freakish to leave the house and completely overwhelmed. Some friends suggested a while back that I watch the TV show Parenthood, so I sought out the episode where the mother who has breast cancer shaves her hair after it starts falling out. I cried along with her through the process. Then I felt empowered along with her when she dolls herself up with a wig, and then again when she decides the wig is not for her and walks around bald.

When the show ended, I went to the bathroom and picked up my husband's electric razor. I managed to shave one tiny patch of hair off. Right in the front. Nice move, Amy. I didn't have the heart to shave the rest, so I put my hat back on. Monday morning, I asked my husband Ben to come home and shave my head after he dropped off the boys off at school. He did, and we made it as far as me standing in the bathtub, Ben holding the razor and telling me he "didn't really feel comfortable doing this." Which I totally get. So, between my discomfort and his, we cancelled the shaving event, and I remained a recluse on Monday, drowning in my sorrow and the hair that was falling everywhere.

I have been fortunate to have many saviors , sometimes knowingly and others unknowingly, rescue me at just right the moment during this process. On Tuesday, my friend Rachel was my savior (she'll cringe at the word if she's reading this. We are typically sarcastic and obnoxious with each other). But seriously. She came over and shaved my head. She had never shaved anyone's head before. She made me laugh throughout, and immediately told me I had a nice shaped head (I was afraid I might discover a more alien-shaped head underneath, not that I'm an alien but sort of like the actress in Parenthood....) as soon as the hair was gone. She took me out to lunch and, before she left and while aware she was running late to pick up her kids from school, she stayed around long enough to buy me my wig. I can not tell you how much her help saved me this week.

When I imagined losing my hair several weeks ago, I thought no big deal.  But I was wrong. Maybe it's about the vanity. Partly. But it's more than that. I think it's also about the feeling of losing control. And of saying goodbye and mourning a mane that has been part of you, a partner in everything if you will, your whole life. I have both loved and hated my hair throughout the years. I have spent hours and decades trying to wrestle my thick waves  into straight shiny submission with blow dryers and expensive hair products. Unlike  my feelings about losing my breast, which I wrote about here, this has been really hard. I know it will grow back. I know it may or may not be the same. But I think my hair deserves a loving goodbye tribute like the one I share with you below.

I highly suggest you play this Kenny Rogers song in the background as it will add greatly to your emotional experience. Enjoy.

bald and beautiful babe

The Carol Brady
Samantha from Charlie's Angels

The Dorothy Hamill (I bet you had this too if you're over 40)
Best hair day eva...8th grade. Look at those feathers!
Sleepaway camp. This is my true hair,
and a curious picture. Look closely at the pic behind
Snoopy and Ralph the Dog
Another sleep away picture.
Yesterday was my mom's birthday.
she died from ovarian cancer in 2002.
The day before, on the 9th, was my dad's birthday.
So this is simply a tribute to my awesome parents, who gave me my hair.

That's the end of the retrospective. If you want to see my lovely eighties hair, there's a video here.

Now, for what you've really all been waiting for, the temporary new me.


And below, with my new wig, which is actually the kind of hair I've always aspired to have. Jonas wore it like a rock star last night. When he dropped it on the floor as though it was his dirty laundry, I screamed "That's my $350 hair! Pick it up!" No doubt that one will make it into Ethan's memoirs.

Wednesday, April 3, 2013

Crying at The Croods and other Strange Phenomena

So, chemo. Yep, I started. Had my first treatment on March 21st, exactly 13 days ago (but who's counting). If I recall correctly, I was surprisingly calm on that sunny Thursday morning. At least I thought I was...First we met with my oncologist who went over the treatment protocol and the side effects of the drugs and then it was time to begin. 
I was assigned my recliner, which was right across from a bathroom (very convenient as it turned out the fluids they give you make you "gotta go gotta go right now!") and settled in with my  iPhone filled with music and healing meditations and my books, as I was planning to get a lot of reading done during my 3 1/2 hours or so at the hospital. 
A sweet and apparently well-protected nurse (think full smock and rubber gloves) came over with my bags of drugs, three in total, each of which would get administered one at a time. 
 I can do this. I thought. No problem.
She hooked the first bag up and sat down with some papers.
"I'm just going to go over each of the drugs you're going to get today and the potential side effects," she said as the first drug and its potential side effects began entering body.
I listened for a bit and then suddenly felt hot. And dizzy. "I think I'm having a heat flash or something," I said. 
She calmly called for another nurse, and two appeared. The three of them stood around me , watching me with concern. "How do you feel ?" one of them asked.
"A little hot," I said.
"Turn the meds off," she said to the sweet, side-effects-sharing nurse.
 They stood around me for a while, watching me like a hot, helpless specimen under a microscope and occasionally making a joke or glancing at each other.
"How are you feeling now?" The lead nurse asked.
"Better," I said. "At least I'm not hot any more."
She walked over and looked at how much of the medicine had left the bag and entered my body.  Apparently it was minimal.
"I think maybe you're just feeling a little anxious," she said. "Why don't we give you some Ativan."
Gee? You think? Of course I was feeling anxious. I was having my first chemo AND they were sharing the side effects with me as the drugs were entering my bloodstream. 
"Maybe we can also talk about side effects another time?" I suggested. "My doctor already went over them with me anyway."
They agreed. They gave me the Ativan, which combined with the Benadryl basically put me to sleep. So much for the reading. But I learned a good lesson that day. During chemo, Ativan is King.

The AfterEffects
It's said that you can often predict when you are going to feel bad after chemo, and just as predicted, I started to feel crappy two days later. Not only did I feel tired and perhaps a little nauseous from my chemo, but I got my #$%!**# period (damn you mother nature). And a headache that has lasted me until today...good lord. 13 days, a migraine, off and on, the type of headache where you just want to detach your head and leave it on the dresser for the day.

I talked to my oncologist yesterday and she thinks I might be having a steroid withdrawal headache ( did I mention they give you steroid pills on the morning of chemo?). She says some people are very sensitive to steroids, even a small amount, and need to be weaned off. So now I'm popping a low dose of steroid pills and weaning myself off of them to see if my headache goes away. My friend/husband's cousin who is a breast cancer survivor put it this way: Welcome to the Chemo game. I guess the rules in this game are pretty crazy - trying to connect exactly what is causing what can get confusing and so I'm now changing my profile pic to this (I know, a lot less inspiring than the Buddha but more true to how I'm feeling right now):

As for other side effects so far:
  • minimal nausea (I've only taken one pill for nausea, which is pretty damn good). I will say that the feeling is very close to that which I felt in first trimester pregnancy with E. Feeling a little queasy? Eat some carbs or chocolate ice cream. All better. I don't think we have to worry about Amy losing too much weight on her chemo regimen.
  • Bad taste in mouth and oversalivating (lovely, yes?). Also had this during pregnancy so there you go.
  • A strange mark on my abdomen, slightly itchy, diamond shaped, as though I was kidnapped by aliens and branded.
  • A tiny bit of neuropathy, in which my hands get red and itchy. I thought it was dry skin at first but now realize it's not and can stop slathering myself in Lubriderm.

Short and Sassy!
And really, that's all that's worthy of mention. So far. But what about my HAIR you ask? The doctor predicted it would fall out around day ten. But I still have it. And it's short. I cut it short in preparation and to make the transition less potentially traumatic (not to mention if all my hair came out I probably wouldn't be able to find my children. Have you seen how thick my hair is??). And I also went to pick out a wig. Say what you will about wigs; some people love 'em. Some hate them. I don't know where I stand, really. But I feel like a need to have one just case. Not sure how my bald self is gonna feel.
 AHHHHHHH! It's Hideous!
I took one picture of myself trying on a blonde wig at the wig store. I only tried it on because I liked the style; not the color. It's simply awful, but I'll share as it will probably make you feel better about yourself.

And, finally, let me address my emotional well being. I'm thinking it might be a bit dicey at the moment. It must be, because I cried during the movie The Croods last Friday. If you haven't seen it or heard of it, here's a brief description:

This prehistoric comedy adventure follows the world's first family as they embark on the journey of a lifetime when the cave that has always shielded them from danger is destroyed. Traveling across a spectacular landscape, the family discovers an incredible new world filled with fantastic creatures -- and their outlook is changed forever.

Crying at a kids movie is OK if it's something like Bambi or Toy Story 3 (if you're a parent and you didn't cry at the end of that movie there is something seriously wrong with  you emotionally. Just sayin'....)
But really..The Croods??  I totally didn't see it coming. We got to the movie late (anyone who knows me knows this never happens) and I had to squeeze into the last two seats in the second last row of the balcony. J sat on my lap and E sat to my right. I could barely even see over J's head and was having a hard time following what was going on so it's not like I felt emotionally invested or anything. But we came to
a scene where the dim-witted father has to toss every member of his family across a great and stormy divide (I think they were jumping to the sun or something- as they were always looking for the "light" all the time and trying to stop hiding in caves) and that's when the waterworks started. 
Was anyone else in the entire theater crying? I wondered. Or was there just something seriously wrong with me? Were my defenses down to due to chemo? Was it my hormones? I casually wiped my eyes with my sleeve. I told my husband that evening about my crying over dinner and he laughed at me. Well, we laughed together.

But then, the next day, I was reading Pema Chodron's When Things Fall Apart and I had an epiphany. Take a look at these excerpts from her chapter called "It's Never too Late":
"It struck me that if all of this is really a dream (life), I might as well spend it trying to look at what scares me instead of running away."
"Sometimes it seems we have a preference for darkness or speed. We can protest and complain and hold a grudge for a thousand years. But in the midst of bitterness and resentment, we have a glimpse of maitri. We hear a child crying or smell that someone is baking bread. We feel the coolness of the air or see the first crocus of spring. Despite ourselves, we are drawn out by the beauty in our own backyards."

So you see what I'm getting at? The seemingly benign Croods is actually a movie with a powerful Buddhist message. Get out of your caves everyone! Run toward the light! Enjoy your life while you can!

What do you think?

It's either that or I'm becoming emotionally unglued.