August 29, 2013

Rain, rain, go away...

Unbelievably, it's raining and cool in Seattle these past two days. Normally August and September are the most beautiful months of the year, when it comes to weather. Right now it's pouring! I planted some lettuce and chard seeds yesterday. I guess I won't have to water them any time soon.

I think I will curl up with a warm puppy and a good book for a bit. Maybe a cup of hot cocoa too...  At least it's not so cool that we have to put the heat on. That's been known to happen from time to time. When my sister and niece came to my 5th metsiversary, it was so cold we had to loan them long pants, long-sleeved shirts, and fleece.

What else can you do when it pours?

August 27, 2013

Starting Xeloda cycle 9 next week

I saw Dr G today and he says my tumor marker has fallen a few more points (now 152). My other numbers all  look normal, including my liver function (an indication of the health or lack thereof for my liver mets).

However, I did complain to him about recently having to "reach" for words. You know, when you can describe the thing but can't come up with the actual word right away. Dr G says it could be a sign of chemo brain, or even middle age, but he wants to order a brain MRI in case it's my brain mets acting up.

I will have the brain MRI on September 9th and see him a few days later to get the results. In the meantime, I will continue on the same regimen of Xeloda daily by mouth, Avastin every two weeks by infusion, and Aredia and Faslodex (infusion and injection) every four weeks.

I say, let's drink rose wine, eat ice cream, pick the blackberries and generally enjoy the rest of the summer.

August 20, 2013

Happy metsiversary to me!

Today is the eleventh anniversary of my dance with advanced cancer. Eleven years ago today, August 20, 2002, I got the news that my cancer had returned and I broke my left femur, which was riddled with metastases. Read all about it here.

In these eleven years, I have been on many medications. I've had multiple side effects. My cancer has been stable, has grown, and has been stable again. Right now it's stable on Xeloda and a combination of other drugs, thanks to the brilliance of my oncologist, Dr G (yes, he is the smartest man in the world), and to my indolent (i.e. lazy), slow-growing cancer.

I've lost so many friends to cancer over these eleven years and longer. Some I knew well and were particularly dear to my heart (oh how I miss Charisse, Emily, Josh, Dena, Sirron, Stephanie). Others I met through support groups or as mentorees through Sharsheret and Young Survival Coalition or were referred by friends. Each death was a loss to me. How can I not have survivors' guilt after losing so many, especially young, people?

And yet, here I am -- kind of an Energizer Bunny of metastatic breast cancer. I just keep ticking along. I now have brain mets, bone mets, and liver mets. Each new diagnosis whirled me yet again on the cancer merry-go-round.

But whether I am riding up and down on a merry-go-round pony or sitting on a bench, I am still a "glass half-full" person. That natural optimism helps me cope with the pony's ups and downs. I think I live a better, more fulfilling life because my glass seems always half full. At least it's easier to cope this way.

And to you to whom I may seem like Pollyanna, you've also read about my hard times here on this blog. To those who see me in public and think I look so well, it's because when I feel poorly, I don't go out. Some days I only move from the sofa to the bathroom and back again. Rik cares for me, Bobka the dog cuddles with me, I eat a piece of chocolate and am thankful that my life does go on.

So today is the one day I might give cancer a big, wet Bronx cheer, otherwise known as a "raspberry." And we will celebrate with good friends, delicious food, and my personal four food groups -- chocolate, champagne, whipped cream and potato chips (I never met a fried potato I didn't like).

To all my doctors and nurses, to the health care assistants who cheerfully welcome me and treat me like a real person and not a diagnosis -- thank you. This dance with cancer is a partnership among us all.

Here's to living with cancer!

August 14, 2013

Dunava on the radio

Tune in to KBCS FM on Friday morning around 11 a.m. PDT to hear my choir, Dunava, singing songs from our new CD, Bulgaria, on The Caravan

Seattleites: it's at 91.3 FM. Everyone else can stream online at KBCS.

August 12, 2013

More insomnia

I've had several more bouts of insomnia lately. Even Rik joined me in not being able to sleep one night last week!

I can't figure out why this is still happening. I weaned myself off nightly Ativan at least two weeks ago, but when I get into bed I find I cannot fall asleep. And when I finally do fall sleep, usually around 2 or 3 AM, it's patchy -- I awake frequently -- and I hardly ever feel rested. So I stay in bed until 10 AM when I tell myself I really need to get up.

I may have developed a very short window after getting into bed when I can fall asleep easily. But if Rik coughs, or I turn over, or someone says something, sleep ends for me until the middle of the night.

Last Friday night it also didn't help that some young men were standing in front of our neighbor's house (across the street) talking and carrying on until almost 3 AM when a thunderstorm and rain finally drove them away.

I try not to nap during the day so that I hopefully can sleep at night. I am open to trying new techniques to deal with insomnia. I already practice yoga breathing and counting backwards from 100. I really prefer not to get out of bed in the middle of the night.

August 05, 2013

Bharatanatyam Arangetram

Yesterday we attend the Bharatanatyam Arangetram of one of Rik's students. A truly over-achieving kid, she spent the last year improving her skills at classical Indian dance in order to give a recital for her Arangetram, to celebrate coming of age as a young Indian woman. Wikipedia call an Arangetram "the debut on-stage performance of a classical art student, after undertaking years of training. It is a graduation performance for any art form."

M is a remarkable dancer, having spent 15 years studying various Western forms and three years studying classical Indian dance. I was amazed at her grace, skill and stamina as she danced for three hours in a solo performance, accompanied by live music from a traditional drummer and flutist, her cousin the singer, and her guru/dance teacher. Her mother told us that M practiced six hours a day for the past months, and needed acupuncture weekly in order to keep dancing at that pace. One of her solo pieces was 35 minutes long!

M's family invited her family, friends and teachers to enjoy the Arangetram and stay for a delicious vegetarian Indian dinner after the recital. M is evidently extremely bright and dedicated to her many passions. M's fifth-grade teacher teacher said to the hundreds of people present that M is happiest when she is learning something challenging.

To protect M's privacy, I won't post any photos, but please search Arangetram to see colorful images of classical Indian dance costumes.

The whole recital was a reminded us of attending the bar or bat mitzvah of a brilliant young person who can lead the whole service in Hebrew and chant both the Torah portion and the Haftorah. Rik and I were honored to be included in his student's latest triumph!

Best breast cancer blogs

Healthline just named this one of the 24 best breast cancer blogs of 2013. I am honored to be included in this group.

My blog is listed here. Scroll through the rest of the blogs to learn a little more about what it's really like to live with breast cancer.