JK

My doctors at Memorial Sloan Kettering are great. I have a lot of them, and I always feel like I’m in the best hands. I especially like my eye doctor who I don’t even need an appointment to see and who gives me really high self esteem. He always tells me how smart I am. Plus, since my vision is great, I drop by just because I love passing tests.

My brain surgeon is a rock star. When she saw the size of my tumor, she delayed her vacation and got right in there – I was back home in two days! My primary oncologist is kind and calm and young. She’s never in a rush, and she encourages protest participation.

I like my radiation oncologist too, although sometimes seeing him is an emotional roller coaster ride. Last year, during the same visit that he told me that my brain was perfect (Yay!!!), he also reminded me that every day was a gift (Dang). Don’t get me wrong – I appreciate every day being a gift, and thanks for the reminder. But it made me feel closer to toast than was probably necessary at the time.

Yesterday, he broke the news that there was cancer progression in my spine and hip (Boo). When I asked him how my brain looked – he said “Did I look at your brain? I think it looked fine.” (Yay!!) But I told him he’d better double check. He pulled up the scan on his computer, and upon further reflection, he thought that-  Hmmm – yes there are new metastases. (F).

Luckily, he said that my brain could be easily “spot welded” with radiation and the spots were small and in places that were easy to reach. He also said that my hip could be zapped at the same time. Only one day of radiation (Yay!!).

The nurse who was with us for the whole visit gave me TWO Valentine’s day brownies because it was clear to her that I needed both. The nurses as MSK are the best.

It’s getting weird

One of my favorite things:

when people tell me that I look JUST LIKE someone they know or that I totally remind them of their COUSIN or BOSS. This happened to me daily when I was less of a hermit – but it still happens alllll the time.

I love it because:

A. I love FITTING IN – and being a look a like is fitting in to the max.
And also A. I love the idea of being remembered through others – as a reflection or shadow or shade – a ripple effect. It feels a little magical to me. And a little like living forev.

So if you didn’t realize it before – you’ll note that  I look very much like Weird Al. Please think of me fondly next time you hear “Eat It”. And please think of Weird Al next time you hear my hit song “Cult 2”.

Also – if I remind you of anyone else you know – I want to know who! I would love to add more look alikes to my roster.

New Treatment

As I understand it – the goal for all of the treatments I’ve been on so far is to stay on them as long as possible, in some cases even past cancer progression. One reason for this is to buy more time. Once the existing options are exhausted, I can revisit some of the old treatments that the cancer hasn’t seen in awhile – though this often has a shorter period of efficacy. But my hope is that the genius scientists and researchers will develop new treatments while I hang by the threads of the old ones.

This completely new deal that I started last week – Afatinib + cetuximab – knocked me way out of commission. At one point, I had an allergic reaction, and a whole school of nurses and doctors swooped in to steroid me up. I was most upset at the thought that I would have to skip over this treatment entirely, further limiting the remaining treatment options. Luckily my doctor decided to give it another try by running the drug through me reallll slllllowwww.

While feeling quite crappy, I managed to walk with 400,000 New Yorkers the very next day to say No Way to the new president. And that made me feel part of something important and bigger than myself – and That made me feel better.

I only wish I could have gone out again this weekend to protest the Muslim immigration restrictions. This administration is sickening. But all of the people who are standing up and speaking out and working together to change its policies make me feel better.

Working harder and standing stronger against injustice will help me power through the gnarly side effects. We’ll know in six weeks if the new treatment is working or if I’ll have to start the next best thing. In the mean time I feel so lucky to live here and to have birthday parties, rock shows, out of town visitors, sports sports sports, and reunions with old friends to look forward to and make me feel better.

 

 

 

I feel good

Here’s me in the LUNGevity – Breathe Deep NYC 5K Walk (2016) and the
Bonnie J. Addario – 5K Pancake Stroll (2015)

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I feel good that I have raised almost $7,000 for Lung Cancer Research since my diagnosis. I hope there is another walk or stroll for me to join in 2017. If it comes to it, I might organize a crawl – please join!

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I won!

Well, more like they chose my writing (plus a bunch of other people’s writings) to be included in a staged reading at Memorial Sloan Kettering Cancer Center. This makes my heart soar – I love approval – I love a trophy.

Oooh – and I hope Keanu Reeves and Jennifer Lopez are cast in my piece. (Because I think they both look like me. And why not?)

The performance will be on April 3. Here is an edited excerpt from the bigger deal:

                                                                 Third Party

They dance through the heavy gymnasium doors. They smile at a voter placing a sticker on her scarf. The woman rests her head on the man’s shoulder. His knees crack as he bends to be a better headrest.

A poll worker beckons them forward. “District?”

“Seventy-nine.”

The couple moves slowly across the room to wait in another line. They’ve been practicing this dance for over a year now – he walks bent legged, supporting half of her weight and kicking every few steps to stretch his knees, while she holds an arm out for balance.
“Don’t do it,” she warns.

For the weeks leading up to the election, he tried to convince her that voting for someone who you don’t support is a wasted vote. She tried to convince him that now wasn’t the time to be so idealistic – but wasn’t that the point – and on and on.

“If he’s elected – ” she begins.

“You’ll move to Canada?” asks a smiling young man with a silly curled mustache waiting in line behind them.

“Hell no!” she says, “I’m not going anywhere. I am staying right here on this earth – I mean – right here in Brooklyn until I get to vote again.”

At this, the man stops kicking. He straightens and looks at her. Her bright blue hair whips around her pale face. Her eyes shine bright as she stomps a boot. He takes a ballot from the poll worker. He knows what he must do.

“That one just opened up,” says the guy with the mustache, pointing to the back of the room.

The man leaves her in line, walking fast now. Behind the booth, he takes a deep breath and votes.

Rebel Reality Check

I admit to being shocked on November 8, 2016. I thought the world I would leave to my son and husband would be a kinder and more tolerant one. But I should have seen the writing on the big, disgusting wall.

2016 was quite likely the last election that I will have been able to vote in. It sounds grim, but survival rates for lung cancer patients are just that. I don’t want to be blind or blind sided by the disease like I was by the election. I don’t want to pretend that everything is all right and will continue to be that way as long as I have a great attitude.

Lung Cancer Facts

One by one, the treatments have stopped working. Cancer is an evil genius. Still, I am grateful that there have been so many treatments to try. And I’m grateful to the researchers and advocates that keep trying and keep our hopes high.

Thanks to them and my family and friends, I haven’t given up. My hopes get higher every day. But I feel the need to keep one foot in reality. And while I’m here, I’ll try to get kinder and better every day. I’m a rebel.

Drugs

This pill costs over $12,000 a month without health insurance. The costs to keep me in medicine and treatments and doctors and everything else would be over half a million dollars by now without it.

I am incredibly lucky to have so much support from my family and was lucky to have had good insurance through my job and the teacher’s union. Now – our insurance costs are high, but what would we do with no insurance?

I found these thoughts from Janet Freeman-Daily on Gray Connections to be important and urgent and frightening. Repealing the ACA without a replacement plan may force cancer patients to choose between bankrupting their families or skipping treatment altogether. Very scary business.

Dear Congress: Please Consider Lifetime Caps and Pre-Existing Conditions Carefully

Dear Congress: Some voters say they don’t want the government or insurance companies to spend THEIR money on other people’s healthcare.  They think repealing the Affordable Ca…

Source: Dear Congress: Please Consider Lifetime Caps and Pre-Existing Conditions Carefully