Independence Day Indeed!

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!

xo

Hostile buddha - and now I rant

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):

Walkie Talkies - Sentimental cliche alert

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...

Cockamamy Chemo (and meet Geriatric Amy)

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).

The Cancer Conversation, or Awkwardness Abounds, or Alliteration for the sake of Alliteration

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.

Don't Miss it! A Guest Post by my Friend Kevin (in response to my post yesterday)

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). 

But that doesn't make me a "cat person." 

. . . If anything, I'm more of a dog person. 

Half Way There...and Full of Gratitude

Today is my 3rd chemo treatment out of six. Yesterday my Triple Positive Personality was overflowing so I thought I'd share some deep thoughts about what I'm thankful for:

The Thesaurus. Is anyone with me on this? I friggin' love the thesaurus. What's better than finding a better word? Or finding the perfect word? Euphoria. Thank you people who write the thesaurus.

Hot Showers. Taking a hot shower is often the best part of my day. It's peaceful. You can't take your Iphone or Laptop in there, so it may be the only time, except for sleep, when you can completely disconnect. And who doesn't love hot water massaging  their back or bald head? Tell me people: Have you ever felt thankful for a hot shower? Next time you're in there, think about it. Now that I'm at risk for lymphadema, I'm not supposed to get in hot tubs/jacuzzis. Not that I was ever a huge fan of hot tubs (sitting with strangers in bathing suits who may be passing gas is not really my thing), but I liked to take an occasional dip whenever visiting a hotel. Now I can't, but I can always luxuriate in a hot shower. Thank you to the person who invented the hot shower.

The Policeman who Stopped me for Speeding Yesterday but didn't Give me a Ticket.
I don't know his name, but Mr. Policeman who stopped me yesterday in front of the Reading YMCA for going 35 MPH in a 20 MPH zone (as he pointed out), thank you. You did not stop smiling in the short time you talked with me and I'm not sure why you let me off so easily as I was going to whip off my wig and play the cancer card but I did not have to because all you said was, "Please slow down and be careful" and then, still smiling, you left. You are a good man.

Being Triple Positive. Yesterday at the Y's Pink Program (an exercise program for people with breast cancer), I met my polar opposite: a woman who is triple negative, and thus much harder to treat. She told me how she finished chemo a month ago. That she's doing well. But she said she can't stop thinking about dying. The other ladies said, "No, you can' think that way. You need to think positive." But I imagine that's harder to do if you are triple negative. I will think positive thoughts for her. Maybe you can, too?

This Video. Sent to me by my friend Kevin (do you ever read his comments on my blog posts? They truly are brilliant). I'm not a cat person, but I love this. Can someone tell me if that dog is a pit bull? And if it is, why doesn't it just kick the shit out of Peaches?