September 12, 2014

Still good

Haven't written in a week but all is good so far. I had the second dose of Abraxane and feel fine, haven't lost any hair yet.


In the meanwhile, here is a photo of one of my orchids blooming AGAIN! This is at least the third time for this plant. I think that makes me a successful orchid mama, just like my friend S's mother. This picture is in Jackie's memory, who taught me how to care for orchids.


September 05, 2014

Meanwhile, while we were in Bulgaria...

Mentally going back to Bulgaria now --

We began our second to last day still in Pazardzhik. In the morning T our guide and teacher gave us two hours to ask her questions, listen to her demonstrate different styles, and talk to us about the importance of vocal technique.

This is what I recall from T's talk: In the days before there were large state music schools, people simply sang the way they sang, without much thought for how it sounded and what singing in this way might do for their vocal chords' health. They were singing for pleasure, not for recording etc.

As training singers began to learn proper vocal techniques, more and more began to move traditional songs and styles into proper placement in the throat. They learned to use their skills to reproduce the raw, village sound without blowing out their voices. T said that this is what keeps her singing in her large range at the anne of 54. (She and I are only a few months apart in age but of course have lived very different lives.)

T spoke at length about how to increase one's vocal range and keep it healthy at both the top and bottom ends. As a soprano, I loved listing to her demonstrate how to maintain and grown the upper end of her voice while not losing the lower end.

Later that afternoon we drove the nearby village of  Patelenitsa for a local festival. This small town is something of a suburb of Pazardhik but has it's own population and customs. Rainstorms interrupted the planned start of the festival, but after a few hours of drying the microphones with hairdryers, they started. A woman born here but now living in Calgary was home for a visit and wanted to meet the American singers. She introduced me to her mother, a member of the local choir.




RIGHT The local choir singing in the rain with their accompanist whose accordion is shielded by the umbrella-wielding conductor.

September 04, 2014

Abraxane again

Yesterday I had my first dose of Abraxane in this third round of that chemo. Today I feel fine, maybe had the tiniest queasy tummy last night so took some Zofran just in case.

However, my day at Swedish was too long. I arrived at 130 on time, at 230 a nurse came out with the consent form which I was supposed to sign with Dr G but of course we didn't do this since I've had Abraxane twice before.

Got called back to a chair at 245. Then my port wouldn't give any blood return no matter which way I positioned myself or coughed. At 3:45 I sent Rik home to relax after his first day at school, feed and walk the dogs, etc. I received a dose of alteplase, a drug which can unclog a stuffed up port. An hour later, thankfully good blood return! In the meantime I ate a soggy egg salad sandwich from the bagged lunches and enjoyed a cherry turnover Rik brought up for me.

By 4:45 pm I was so tired of waiting that I asked the nurses to call Dr G's office and get permission to skip the Avastin, which would have added another hour to the total infusion time. Nurse Jacque called out to him in the hallway, and he said "Okay, but she can go home!" Creative thinking nurse Mary Beth called the pharmacy since the Avastin was already mixed (i.e., ready to give to a patient) and they assured her that they could use it the next day.

I was done with the pre-meds (like I needed steroids at this point, I was so wired), Abraxane and Faslodex. I talked with my mom for a half-hour, read some more, and tried to relax. Rik met me at 6:45, we went home, and by 10:00 I was ready to eat some leftover chicken. I was in bed at 11 with all my drugs to relax me and felt fine today.

I take responsibility for my port causing a longer visit but for a two hour infusion to take five hours seems excessive to me. After my four appointments at Swedish's First Hill Cancer Institute, assuming the Abraxane works well for me, I will schedule all my ongoing infusions at the Ballard campus, which has a much better nurse:patient ratio.

August 29, 2014

Update re Dr G

I saw Dr G a few days ago and learned from the scan reports that my cancer has stayed the same in my brain, but the mets in my liver have grown significantly. My tumor marker also went up by 100 points. So it's definitely time to start another chemo. As Dr G put it, Xeloda clearly worked on my brain, but not so well on my liver. The PET/CT scan also showed a new metastasis in my left elbow, as persistent pain there indicated to me night be the case.

So I start Abraxane with Avastin this week, once a week for three weeks in a row. Somehow we fit Aredia (every three months) and Faslodex (monthly) into the schedule as well.

I feel good, and hope that next week's chemo will start to make a difference quickly!

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. 


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I dance with cancer. Oy!