Lisa + Healing

BRCA2 6174 delT.

That’s the breast cancer gene I inherited from my father. That’s the reason I had a bilateral preventative mastectomy six years ago.

Imagine my joy when my doctor told me that in recorded history no one with my gene has ever gotten breast cancer after a prophylactic mastectomy.

Well, meet Patient #1. Or as my surgeon said as she was putting in my chemo port, “Stop being an anomaly!”

I’ll keep this page updated with ramblings and treatments. Add your own well wishes, please!

I am very lucky to have the friends and family that I have. I have never felt so loved.

Hair

My hair is unlikely to look like this ever again and Alyssa Kapnik Samuel took some photos to capture my hair just before it disappears. She’s an amazing photographer and an old soul.

I focus on the change in hair because I suspect I will be a very different person as I traverse and then finish this recovery period. I don’t know what that will be like so hair is a physical representation of my midnight moments of fears and worries (which are blesssedly brief, but I can’t be brave all the time).

Treatment Updates and Random Notes

Mid February: I had an itch in my armpit. I had to hold my arm in a weird way to reach the itch and there was a lump.

Next morning, doctor and ultrasound. Morning after that, biopsy. Couple days later, the call from the doctor that it was breast cancer but it was in my armpit.

I woke up the following morning with my head crooked in my arm and I looked down and thought, “I hate my armpit.” Then I started crying because I hated my armpit. Then I started laughing because I was crying because I hated my armpit.

Welcome to my world.

Feb 24: Dr. Mardones confirmed that my petscan was completely clear except for the three lymph nodes in my armpit. She leaned in, looked me in the eye and said, “You have a curable disease. We’re going to cure you and you will live a long life. But the next 9-10 months are going to be horrible.”

So I made a sign that I look at every day.

March 2 & 3: On the 2nd, I got my port placed and my friend Deanne chauffeured me and stayed with me overnight to make sure I didn’t have any problems from the anesthetic. Also stayed up late for girl talk.

The next day, my friend Lisa (AKA Lisa Rae – we’re Lisa May and Lisa Rae) drove me to my first chemo treatment and stayed the whole time and made it fun.

The start was delayed when the fire alarm went off and we all had to evacuate. I came back in and they started pumping six kinds of dreadful things into me while I sat in a lounge chair eating ginger candy and ice chips while they brought me warm blankets. It was kind of luxurious.

When I got in the car to go home, Lisa Rae had put flowers in my newly-acquired yellow “puke bucket.”

And when I got home, there was an envelope with fluffy giraffe socks from friend Robyn. Life is pretty damn good.

March 5: My boy Brennan decided to buy me a wig!

I call her Charmane.

 

March 6: My friend Cristina took a first pass at cutting my hair.

I’m pretty sure I’m capable of talking about something besides hair.

I’m going to try to start that real soon.

 

March 7: I need to thank everyone who has sent me good wishes, fun diversions, beauty and love. For now, let this picture of the 12 containers of chicken soup (in ice cream containers) that my friend Susan gave me be symbolic of the healing love I so appreciate from you all.

Speaking of Susan, I finally decided to try a little gentle exercise on zoom this morning with her. It was hard, but good. In the middle of exercising, I remembered my mother recovering from her first cancer surgery, trying to lift her arm up to her shoulder level each day and crying. So I cried a little, too.

Cancer isn’t the hardest thing life can throw at you but it’s hard enough. I suspect I’m not the only one who responds to difficulty with gratefulness for the good things, and responds to good things with an undertone of how difficult life is and how much grief there can be. Maybe that’s where the beauty lies – in that intersection between joy and sorrow…

March 10: My white blood cell count is so low I am advised to cut myself off from all life outside my little house for a week or so. Apparently that’s a common thing when you start chemo.

So send me music. Send me jokes. Send me memes and cute animal pics.

Stories are always welcome.

By way of return, here is a picture of the nicest goose I ever met who joined me for a picnic on the river last Monday.

Socks can be your friends.

Here are some dogs and giraffes.

April 6:  I feel like I need to write something. Even though the days are blending into a kind of sameness… So here goes.

Best advice I’ve heard so far: “Don’t eat any of your favorite foods right after chemo because then you’ll hate them forever.”

S’true. All of my life I have loved and been comforted by soup and pie, but now I am starting to dread the sight of them. Nothing tastes quite right after treatment and when you’re not in the mood for food at all, trying to force yourself to eat foods you like backfires in a big way.

I don’t know if there are any broader implications or life lessons there. I hope not…

Self-realization: The tiniest things are proving to be the hardest.

Eating, drinking and moving enough (all of which are supposed to be in healthy amounts) are just not going to happen on the bad days. I have no doubt that this has a harmful impact, but I have decided to celebrate small victories on those bad days. Walking around two blocks instead of one was big this week, and there was a day when it was a major accomplishment to eat a spoonful of something now and then. Yay!

Stunned and captivated by humanity: I don’t know that I’ve ever believed much in unconditional love or friendship. One or two toxic people in your life can make you suspicious of the whole notion of love.

BUT… I have people who have been calling, texting, staying in touch, and some even patient enough to wait for a good day to visit – even though I ran out of things to talk about weeks ago. I have people who zoom-watch movies with me. People who run errands for me and drive me around. And my son calls me every day with news from New York and beyond.

I don’t feel alone. Such a nice surprise.

April 13:

I got three good days at the end of this chemo cycle, and I got to see a friend on each day, woohoo!

And I got my wig trimmed enough that I can now drive without the hair all falling in my face.

I chaired a volunteer Race for the Cure committee for about 10 years in the 1990s and 2000s with some of the most extraordinary women I’ve ever known. During that time, I estimate we raised over $35 million for breast cancer research, education and care. The survival rate went from 25% to 75%. In 2021 it is 90%.

A cancer diagnosis makes you ponder the meaning of your life in a deeper way than usual. Have I ever done anything that made a difference in the world? Maybe… This Race volunteer work is as close as I’m likely to come. I chaired the Closing Ceremonies Committee and my part was to give voice to the 65,000 people who came out to run, to cheer, to mourn, to celebrate life, and to feel part of a community. For many – for most – it was a unique moment where emotions are bursting out of your heart yet each person had a different reason, a different history and future.

I used words and music, balloons and white birds, and somehow I managed to hit that note that acknowledges fear and grief for only a moment and celebrates life and survivorship to its full extent.

So if I have to have cancer, breast cancer is the one that feels like an old friend as much as an enemy. Yeah, that’s probably fucked up, but that’s me.

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