August 20, 2014

12th metsiversary

Today is the twelfth anniversary of my diagnosis with metastatic breast cancer.

It's the only day in which I let myself blow a Bronx cheer / wet raspberry / mouth fart to cancer. Nyah-nyah! It's been twelve years and I'M STILL HERE!

The rest of the year I abide by the deal I made long-ago with my cancer: it could stay with me as long as it was quiet, because (sadly for both of us) if I die, it dies too. Read this blog post for more on the dream that started my deal.

I've planned all kinds of ways to celebrate my metsiversary over the years. Some were large parties; others were intimate gatherings -- but all were with friends and even occasionally with family. It's the kind of event that lends itself to celebrating with people. Tonight, however, is also a friend's very significant birthday, and we've been invited to celebrate with her. I think she'll understand if my toast to her also includes a nod to me.

My favorite toast is the one which my friend K graciously loaned to me so many years ago:
"May all your joy be true joy,
And may all your pain be champagne!"
If you want to join my celebration, then feel free to invite your friends and family to eat some chocolate and drink a glass of bubbly with you. Together we could be a global phenomenon!


August 12, 2014

Back to Bulgaria (metaphorically speaking)

It's time to write more about Dunava's trip to Bulgaria.

Upon leaving Kyustendil and the "Silver Buckle" festival, we took the long drive to Pazardzhik. We stayed in the lovely Hotel Primavera, a small but seemingly new pensione in the town center. I was so tired from the previous days that I stayed in the hotel and did not attend either the afternoon workshop with our hosts, Ensemble Pazardzhik, or dinner with the rest of the group. The rest did me a world of good, because the next day we could choose either a half-day trip to nearby Plovdiv or the same amount of time on our own. Several of us chose Plovdiv, even though it was difficult to get back on the bus again. Thankfully our driver N is a man of excellent good humor.

Sundial on mosque, Plovdiv

Restored Roman vomitory, Plovdiv
Plovdiv is divided, like Jerusalem, into a very old city and a new city. The highlights of the old city are the many restored ruins, which feature a complete Roman amphitheater still used for performances. Our small group explored the tourist part of the old city. New shops, cafes, and restaurants abound. Except for the public toilets, where a squat toilet and Western-style toilet sit privately side by side. To use either one, you have to "pay" the lady outside 50 stotinki, which regretfully doesn't make the toilets any cleaner.

Restored Roman amphitreatre, Plovdiv
We climbed up the cobblestone streets and looked in almost every antique shop to assist J in her hunt for antique jewelry and R for her search for authentic clothing. At the top of the hill we stopped for a light lunch overlooking the amphitheater.

Upon our return to Pazardzhik, I joined everyone for the afternoon workshop, during which I tried to pick up the four songs they had begun the day prior. We enjoyed a yummy dinner in an outdoor restaurant. Unfortunately, what felt like every mosquito in Bulgaria joined us and nibbled on D and I for their dinner. After too many bites to count, I headed back to the hotel.

On the way I saw a most beautiful cocker spaniel, enjoyed yet another conversation in French with M, his maman, and picked up a few more mosquito bites.


M and her English cocker spaniel David, Pazardzhik

August 06, 2014

Cancer update

I really promise to write more about Bulgaria, especially a topic on my mind for about two weeks. My brain calls this subject "A Tramp Abroad," in humble imitation of Mark Twain. But first a cancer update.

I saw Dr G today for the first time in a month. My tumor marker has climbed 50+ points since my last treatment. Since this big a jump is no longer just "noise" to him, Dr G thinks it is time to change treatment. He would like me to try a taxane again because Abraxane worked so well, until increased neuropathy in my feet began to make me stumble when walking. I reminded him that even one dose of Taxol caused my neuropathy to flare out of control.

We compromised on trying Abraxane at a lower dose than last time. I suggested that first he order a PET scan and brain MRI, so that I start the Abraxane with fresh data. I will see Dr G after those scans, get the results, and then we can move forward. I truly love, admire and appreciate how that man listens to me!

In the mean time, I am not to restart Xeloda or methotrexate, but to continue Aromasin daily, and Avastin (every two weeks), Faslodex (once a month) and Aredia (every three months).

According to www.chemocare.com, the following side effects are common (occurring in greater than 30%) for patients taking Abraxane:

Low blood counts (your white and red blood cells may temporarily decrease which can put you at increased risk for infection and/or anemia)
Hair loss
Nausea
Abnormal ECG (electrocardiogram)
Peripheral neuropathy (numbness and tingling of hands and feet)
Arthralgias and myalgias, pain in the joints and muscles (usually temporary occurring 2-3 days after Abraxane, and resolve within a few days)
Weakness and fatigue
Increases in blood tests measuring liver function (these return to normal once treatment is discontinued)

Last time for certain I experienced peripheral neuropathy, hair loss, weakness and fatigue; perhaps now blood counts and nausea (I can't remember and anyone can search my blog for that information). Who knows what will happen this time? My wig and scarves are ready, just in case...

July 31, 2014

Migraine

I think my jet lag is expressing itself as migraines, so I could not blog yesterday after checking the backup of email from when I was away. If not today, I will write the next day.

Otherwise I feel well, but I've never had a migraine before and it's extraordinarily painful, even for someone with my high pain tolerance - perhaps a 7 on the 1-10 scale (with my broken leg continuing as my personal "10").

I am getting labs drawn today for tomorrow's Avastin, then hope to attend my support group after. Rik is driving me, as the migraine seems to be triggered by light and the past few days have been very sunny in Seattle.

A friend gave me good advice on coping with migraines. Stay in a cool, dark, room (I'm wearing an eye shade), put a cold cloth over your head. I may try a "Well Patch," since it's an OTC item.

Read here for more on migraines.

July 29, 2014

Home!

I am home after two weeks in Bulgaria with Dunava. I promise to post more tomorrow!

July 26, 2014

Touring and Kyustendil

YThe past few days we've been busy with touring. This is the unglamorous side of even our tiny bit of showbiz. Wake up, get on the bus. Stop for gas, get on the bus. Arrive at new location. Short break, then lessons and/or performance. Dinner, sometimes very late with musicians, sometimes just us. Go to sleep. Repeat. 

After Bansko we want to Kyustendil. This is the performance sponsored by the USArtist grant (https://m.facebook.com/story.php?story_fbid=10152614132464017&id=699319016). 

After arriving in Kyustendil we had been invited to march in the parade with the other performers. J and I were again too tired to march, but the others had fun. Baby E makes us friends everywhere we go!

Our set was fourth in the lineup after groups from Bulgaria, Macedonia and Azerbaijan. Such glorious costumes, dancing and singing! It was my idea of heaven and brought back sharp memories of performing with Zivili in Columbus Ohio and with Radost in Seattle. 

Dunava was so well received, with  especially big applause for a Shope quartet featuring Ramona's Bulgarian style "yodeling."  

We went early to bed because next day we were back on the road. Dina received a silver pufti (belt buckle) and certificate of appreciation presented by the vice mayor. 


July 23, 2014

Bansko




We arrived in Bansko after stopping at an outdoor market with homemade honey, jams, beans (don't ask me why) and some gorgeous mushrooms. Jody and I rested and then both went to the workshop featuring a 14year old baritone with an amazing voice. 

We learned two songs and then went to dinner when I finally was able to order lamb. And fries. Not as good as the chips a few days ago. 

I walked back to the hotel and missed the music but had another lovely adventure. I got lost eating my daily ice cream and asked three older women where our hotel was located. They offered to walk me there (all this in Bulgarian and pantomime). 

One lady spoke about the same amount of French as I do: call it high school francais. Victoria was born here in Bansko. We chatted with great effort of memory on both parts. She asked how old I am (54) which she did not believe.  "You must be 25! No? But your face shines like light!"  Such a lovely compliment. 

When we caught up to the other ladies, we all introduced ourselves and Victoria explained about the crazy American singers from Seattle. I had to dig out my music to share with them and sampled Kaeramfilchetu and Izgryala e Mesechinka, which Yordana knew and sang with me. We were all very happy, me for finding them and them I think for befriending me. No doubt they will done out on this story as much as I. 


Selfie of Victoria, Yordana, Maria and me

July 22, 2014

Random pics from BG

 


For Jewish friends: Hila and I at the "kotel" in Kotel


Desislava my music teacher. 



Chocolate ice cream face

Roommates

July 21, 2014

Music school

Yesterday we arrived at the music high school T attended. It's in the mountains of Kotel, a small village in the foothills. 

After we arrived I was exhausted from the earlier part of the day: shopping, lunch in an outdoor cafe and hot, hot sun. A shower and short nap helped and I was able to attend the group lesson. We learned a really beautiful "Happy Song."  

Our driver had a mandated 24hour break, so most of walked down the winding road to a lovely restaurant. We sat outdoors by a waterfall. A delightful setting. Sadly the menu was confusing. 

M thought she ordered sea scallops, French fries and hot tea. What she got was a bottle of cold iced tea, Saratoga-style potato chips (cut thin and fried but with a soft potato center) and pork scallopiini. But we laughed it off and it made a funny photo. 

We returned late, after midnight, and I barely woke up in time for coffee and the special Kotel bread - so yummy! Then I had a private lesson with one of the singers working with Dunava.

Lunch is in an hour and I am going to nap until then. 

J and I at a scenic view near Kotel

July 20, 2014

On the bus

We're driving now from Burgas to Khotel (no not the Wall in Jerusalem). 

Yesterday we left Varna. I enjoyed a walk on the beach while the others were singing for BG tv. I can't sing soprano at 9 am!

The long afternoon drive was broken by a surprise lunch at a family home. The owners were so welcoming to us and fed us a lovely traditional meal. Read more from Ramona on Dunblog (http://www.dunavlog.blogspot.com). 

I learned that the evening performance was late and dinner would be even later in a town 45 minutes drive away.  So J and I stayed in Burgas. I had excellent pizza for dinner and got a good night's sleep. 


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I dance with cancer. Oy!