1. The brain MRI results were very good and the three lesions are faint.
2. The Abraxane has clearly become too toxic. Plus my CA 27.29 tumor marker is about the same as last time, so it's also no longer as effective. I get to take a two week break from treatment in hope that the side effects (fatigue and neuropathy) ease up.
3. Given the above, he wants me to seek a second opinion from an oncologist at Seattle Cancer Care Alliance. Dr G could think of six potential chemotherapies, and wants the benefit of other wisdom in deciding which one to use next. So I need to help gather all my volumes of medical records from Swedish Medical Center and from Minor and James, which have never been consolidated into one place.
4. I will see Dr G again in two weeks, at which time he wants to start me on something.
Then he showed me a web site with his principles of oncology, but I neglected to get the URL so I can share it with you. They were concise and focused -- just like Dr Goldberg.
Last Dr G gave me a hug, which tells me that he really cares about me as a person, not just as a patient.
November 29, 2011
November 28, 2011
Dunava in concert!
FOR IMMEDIATE RELEASE NOVEMBER 27, 2011
SEATTLE BALKAN WOMEN’S CHOIR TO SING EASTER EUROPEAN SONGS
Sat, Dec 10, 2011 at 7:00 pm
Museum of History and Industry, 2700 24th Ave East, Seattle WA
Seattle -- Dunava, a local women’s choir specializing in folk songs from the Balkans and Eastern Europe, will perform in the biggest concert since their inception in 2005.
Dunava will perform traditional and modern Eastern European songs and a few seasonal favorites in a variety of arrangements. Local guest artists David Bilides will accompany the choir on Macedonian tambura and kaval, and Jen Morris will join in with songs from Caucasus Georgia.
Tickets are $17 general admission, and $12 for students and seniors. Purchase tickets online at Brown Paper Tickets or directly from Dunava members.
Dunava (Bulgarian for "the Danube") is a Seattle-based women's vocal ensemble specializing in the a cappella folk music of the Balkans. Founded in 2005, Dunava consists of singers from diverse musical backgrounds who all share a passion for the distinct and beautiful harmonies of Eastern Europe. The repertoire includes songs from the cities and villages of Albania, Bosnia, Bulgaria, Croatia, Caucasus Georgia, Greece, Macedonia, Romania, Russia, Serbia, and Ukraine. Dina Trageser is the choir’s founder and artistic director.
Dunava is affiliated with the Radost Folk Ensemble, and has performed at Northwest Folklife Festival, Croatia Fest, the Seattle Folklore Society and Shoreline Unitarian church concert series, the Seattle Art Museum and Seattle Symphony’s Day of Music at Benaroya Hall. They have performed with local groups Dave & the Dalmatians, Balkan Cabaret, Balkanarama, and Vela Luka. Dunava won first place for the “Folk Category” in the Third Place A Capella Festival in 2011. The choir released its first CD in 2009. Listen to Dunava online at http://www.dunava.org.
David Bilides performs and teaches music from Greece, Macedonia, Bulgaria, and Turkey on a variety of traditional instruments in the US and abroad. David is a frequent guest performer with different groups and at traditional folk music and dance events across the country. Currently he is collaborating with fellow Seattle resident, Macedonian singer Dragi Spasovski. More information about David Bilides: http://www.izvormusic.com/bios/david.html.
Jen Morris is the founder and director of the local Georgian a cappella ensemble “onefourfive.” Her fascination with traditional Georgian vocal music has led her to study in Georgia with songmasters from the regions of Ach’ara, Samegrelo, Svaneti, Imereti, and K’akheti.
# # #
Post-Tday
I had a rough weekend. On Saturday morning, we all went to synagogue (Rik was a greeter at the door). There was a huge crowd and although I am generally one who gets energy from being with people, it all sort of wore me out quickly. I came home to nap, perked up mid-afternoon, and crashed again.
On Sunday I barely moved off the sofa. I had slept poorly both Friday and Saturday nights, and the combination with chemo fatigue was monstrous. Somehow I got washed, dressed and ate breakfast, only to then find myself knocked out on the living room sofa, where I lay in a stupor for about four hours.
At some point I got up and made my way to the other sofa and joined Rik and my mom in front of the television, where we sat for quite a while. We did manage to go out for a great dinner at the Sand Point Grill with friends, but as soon as we came home I crashed again.
The day of fatigue was an unfortunate end to an otherwise lovely visit with my mom.
This morning I awoke early in order to do all the necessary stuff and drive my mom to the airport. We got out the door on time, and the traffic was so minimal on the way home that I managed to get to Dr G's office for a blood draw, go to the grocery store and the pharmacy, start a load of laundry and do some promotion work for the upcoming Dunava concert. Now I am completely wiped out again and will retire to my favorite spot on the sofa with Bobka the dog.
On Sunday I barely moved off the sofa. I had slept poorly both Friday and Saturday nights, and the combination with chemo fatigue was monstrous. Somehow I got washed, dressed and ate breakfast, only to then find myself knocked out on the living room sofa, where I lay in a stupor for about four hours.
At some point I got up and made my way to the other sofa and joined Rik and my mom in front of the television, where we sat for quite a while. We did manage to go out for a great dinner at the Sand Point Grill with friends, but as soon as we came home I crashed again.
The day of fatigue was an unfortunate end to an otherwise lovely visit with my mom.
This morning I awoke early in order to do all the necessary stuff and drive my mom to the airport. We got out the door on time, and the traffic was so minimal on the way home that I managed to get to Dr G's office for a blood draw, go to the grocery store and the pharmacy, start a load of laundry and do some promotion work for the upcoming Dunava concert. Now I am completely wiped out again and will retire to my favorite spot on the sofa with Bobka the dog.
November 25, 2011
What I am thankful for
Self-care, no matter how long the painful neuropathy in my fingertips takes me to pull on my socks.
A loving husband who reaches across the dog to warm me when my toes are so cold the neuropathy is more severe than usual.
This visit with my Mom. She lets me take every day at the pace I need. She moves as slowly as I need to, or sits on the couch reading a book and letting the dog love her when I can't move at all.
Speaking of dogs: Bobka the Cavalier King Charles spaniel, who excels at showering affection on one and all.
Baking yesterday's apple pie. Even the simple act of cutting apples made me feel more like I was part of the Thanksgiving meal prep.
Being invited to someone else's home for the holiday celebration. My afternoon nap gave me enough energy to participate in a lovely Thanksgiving dinner party last night. And I didn't have to cook or clean up afterwards.
I'm not thankful for cancer. If it was a gift, I'd be first in line to return it.
I am thankful for Dr G and my wonderful medical care team who have helped keep me alive, alert and able to celebrate yet another holiday, nine years after my initial diagnosis with metastatic breast cancer.
To all who live in CancerLand, I hope you are able to find something in your life to be thankful for every day.
A loving husband who reaches across the dog to warm me when my toes are so cold the neuropathy is more severe than usual.
This visit with my Mom. She lets me take every day at the pace I need. She moves as slowly as I need to, or sits on the couch reading a book and letting the dog love her when I can't move at all.
Speaking of dogs: Bobka the Cavalier King Charles spaniel, who excels at showering affection on one and all.
Baking yesterday's apple pie. Even the simple act of cutting apples made me feel more like I was part of the Thanksgiving meal prep.
Being invited to someone else's home for the holiday celebration. My afternoon nap gave me enough energy to participate in a lovely Thanksgiving dinner party last night. And I didn't have to cook or clean up afterwards.
I'm not thankful for cancer. If it was a gift, I'd be first in line to return it.
I am thankful for Dr G and my wonderful medical care team who have helped keep me alive, alert and able to celebrate yet another holiday, nine years after my initial diagnosis with metastatic breast cancer.
To all who live in CancerLand, I hope you are able to find something in your life to be thankful for every day.
November 22, 2011
"You're a singer"
My friend G, who was the only person I knew when I moved to Seattle almost 20 years ago, heard the Dunava gig last Saturday night and played for the Vela Luka performance of Ladarke, which Dunava participated in. After the show he said to me, "Jill, when I met you, you were a dancer who could sing. I listened carefully to your solos tonight, and now I can say -- you're a singer."
November 21, 2011
Today's chemo
Everything went smoothly today EXCEPT there was already a long line of people ahead of me at the lab at 9:30 AM. I had to wait for almost an hour just to see a nurse and have my port accessed. The weeks when I get Avastin require urinalysis to make sure my kidneys are in good shape, and that lab test takes longer to process. So it was after 11 AM when they called me back to the infusion area, and past noon by the time the pharmacy delivered the Avastin. (That drug always has to come first in this chemo combo.) I finished at 2:30 PM.
Thanks to my good friends M and R, I had plenty of company. M even ran downstairs to get me a delicious lunch of vegetable borscht, served with a dollop of sour cream, and a spinach-mushroom piroshky. So much better than a hospital cafeteria tuna salad sandwich!
I had a short nap when I got home and am very happy to be using our computer and able to "talk" online again.
Thanks to my good friends M and R, I had plenty of company. M even ran downstairs to get me a delicious lunch of vegetable borscht, served with a dollop of sour cream, and a spinach-mushroom piroshky. So much better than a hospital cafeteria tuna salad sandwich!
I had a short nap when I got home and am very happy to be using our computer and able to "talk" online again.
Back online
I picked up our repaired computer this afternoon on my way home from chemo. Century Link had shipped us a new DSL modem, but the transformer -- the thing that you plug into an electric socket -- didn't work. Rik hooked up the new modem with the old transformer, I spoke with II Net to get our internet codes, and voila! We are back online. CLink is shipping us another transformer and has extended the return of the old DSL modem to 30 days so that I can return all the old parts together in the same box.
I did have a few scary moments when the newly repaired iMac froze twice, but I took a break had some Ativan to reduce my stress level, rebooted the machine and now everything appears to be working. Whew!
I did have a few scary moments when the newly repaired iMac froze twice, but I took a break had some Ativan to reduce my stress level, rebooted the machine and now everything appears to be working. Whew!
November 18, 2011
Brief update
My fatigue is pretty high this week. I am crashing on the sofa every afternoon and I actually fell asleep while at yoga today (my snoring woke me up). Dr G took me off the Lyrica at my request. It turns out that part of the reason for my recent blurry vision may have been a side effect of that drug. We'll see how quickly I lose the four pounds I gained while on it these past two weeks. My eye doctor says my eyes are fine, no change from the last prescription he wrote in June. That was a relief to hear. Plus he says he can see eyelash stubs growing back!
The computer is salvageable after all. The MAC Store recovered all the data from the hard drive and we need to purchase a new video card, which got fried in the electric surge from the lightning strike. We're also buying 4 gigs of new memory and a new hard drive. This should make the computer operable for several more years. And it's still less than half the cost of a new iMac.
I am coping with the neuropathy. Increased occasional pain flares worry me but I don't think there's much I can do. My fingertips seem to be worse in the morning but are fine throughout the day.
It's been very cold lately and lightweight hats are no longer warm enough for my balding head. I've pulled out a fleece cap. It's not stylish but it keeps my head warm/ I'm still losing more than a few hairs every day in the shower.
The computer is salvageable after all. The MAC Store recovered all the data from the hard drive and we need to purchase a new video card, which got fried in the electric surge from the lightning strike. We're also buying 4 gigs of new memory and a new hard drive. This should make the computer operable for several more years. And it's still less than half the cost of a new iMac.
I am coping with the neuropathy. Increased occasional pain flares worry me but I don't think there's much I can do. My fingertips seem to be worse in the morning but are fine throughout the day.
It's been very cold lately and lightweight hats are no longer warm enough for my balding head. I've pulled out a fleece cap. It's not stylish but it keeps my head warm/ I'm still losing more than a few hairs every day in the shower.
November 16, 2011
Side effects update
I've noticed an increase in side effects sinxce Monday's chemo. Actually, I've noticed an increase in side effects after each week's treatment in this cycle and the last one.
Neuropathy: My toes are about the same -- tingling and painful but not really numb. I hope to hear from Dr G today about getting off the Lyrica, since it really isn't providing significant relief. I still take two teaspoons of L-glutamine powder twice daily in cold water,. (I drink tart cherry juice with the morning dose. Tart cherry juice is supposed to be effective against neuropathy and at thsi point I want every possible tool) I'm taking 600 mg of gabapentin three times a day and will increase that to 900 mg three times a day once I come off the Lyrica. I'm also taking a vitamin B-6 complex. All thisi is uder the direction of my naturopath and my oncologist. I also plan to ask the naturopath about acupuncture to treat neuropathy.
This week I noticed pain in my fingernail beds. It hurts when I type (but not too much, so I'm doing it!). I find it challenging to open anything that requires use of my fingertips, such as a ziploc-type bag and container lids. If this symptom progresses rapidly I will be sure to tell Dr G, because it could really limit my daily life. Imagine being in too much pain to button your clothing and you'll know what I mean.
Fatigue: This one comes and goes. I almost always nap on chemo Mondays. Yesterday afternoon I crashed hard on the sofa for two hours, but I also stretched myself to run all the errands before coming home. I awoke in time to make a birthday dinner. I can't say if I will need a nap today but crash time seems to be around 3 PM and I can prepare by being home before I "hit the wall".
Hair Loss: Yes, my hair is begining to come out for the third time in 18 motnhs. It had actually started to grow again, but I found hairs in my hands after shampooing both yesterday and today. This side effect is more vanity than anything else, although having no hair in winter makes mr feel cold even when indoors with the heat on full blast. I expect to be back to hats and scarves full time if this continues.
Bloody Nose: I continue to fight an Avastin-related bloody nose. I find red or ppink in my tissue on a regular basis, even ten days since my last dose of Avastin. This is also inconvenient and annoying but like the hair loss, not serious unless my nose doesn't stop bleeding.
Cancer has taken many things from my life, but somehow I manage to continue living with it,.I'll stay on this merry-go-round and live with cancer, but I'd like a chance to sit quietly on the bench soon. My ride on the pony has gone up and down enough lately.
Neuropathy: My toes are about the same -- tingling and painful but not really numb. I hope to hear from Dr G today about getting off the Lyrica, since it really isn't providing significant relief. I still take two teaspoons of L-glutamine powder twice daily in cold water,. (I drink tart cherry juice with the morning dose. Tart cherry juice is supposed to be effective against neuropathy and at thsi point I want every possible tool) I'm taking 600 mg of gabapentin three times a day and will increase that to 900 mg three times a day once I come off the Lyrica. I'm also taking a vitamin B-6 complex. All thisi is uder the direction of my naturopath and my oncologist. I also plan to ask the naturopath about acupuncture to treat neuropathy.
This week I noticed pain in my fingernail beds. It hurts when I type (but not too much, so I'm doing it!). I find it challenging to open anything that requires use of my fingertips, such as a ziploc-type bag and container lids. If this symptom progresses rapidly I will be sure to tell Dr G, because it could really limit my daily life. Imagine being in too much pain to button your clothing and you'll know what I mean.
Fatigue: This one comes and goes. I almost always nap on chemo Mondays. Yesterday afternoon I crashed hard on the sofa for two hours, but I also stretched myself to run all the errands before coming home. I awoke in time to make a birthday dinner. I can't say if I will need a nap today but crash time seems to be around 3 PM and I can prepare by being home before I "hit the wall".
Hair Loss: Yes, my hair is begining to come out for the third time in 18 motnhs. It had actually started to grow again, but I found hairs in my hands after shampooing both yesterday and today. This side effect is more vanity than anything else, although having no hair in winter makes mr feel cold even when indoors with the heat on full blast. I expect to be back to hats and scarves full time if this continues.
Bloody Nose: I continue to fight an Avastin-related bloody nose. I find red or ppink in my tissue on a regular basis, even ten days since my last dose of Avastin. This is also inconvenient and annoying but like the hair loss, not serious unless my nose doesn't stop bleeding.
Cancer has taken many things from my life, but somehow I manage to continue living with it,.I'll stay on this merry-go-round and live with cancer, but I'd like a chance to sit quietly on the bench soon. My ride on the pony has gone up and down enough lately.
November 15, 2011
Happy birthday to me!
As a special treat I went shopping and bought these silver hoop earrings set with tiny black diamonds. Naturally they were on sale!
November 14, 2011
This is a test
If you are reading this on my blog, I have successfully figured out how to post via email. Yay me for overcoming a technical challenge!
Sent from my iPhone
Chemo Monday
Today's treatment went very smoothly. There was a long wait for the lab, as it was crowded with many patients, evene at 8:30 AM. Everything else went slick as can be, and I got out in time to have a great lunch with my friend at the Elliott Bay Cafe. (No, we didn't browse the bookshelves too.) Lunch was potato-parsnip-am soup with brie cheese and a crepe filled with yams, arugula and goat cheese. Delish.
I'm at the library now, using a public computer, and will now try to turn on remote blogging. Hopefully I will be able to post from my cell phone soon.
I'm at the library now, using a public computer, and will now try to turn on remote blogging. Hopefully I will be able to post from my cell phone soon.
Computer crash
Last Friday at 5:50 PM a HUGE lightning strike hit our neighborhood. It fried our DSL modem and appears to have damamged our cmoputer se3verely. The iMac is at the "doctor" and I won't hear from them until later in the week. In the meantime I will try to activate remote blogging from my cell phone.. However, the phone's tiny keyboard makes it tough to write long posts. So don't expect to hear from me often durin gthe next fie or so days.
UPDATE: I don't really understamd it but thnk I smply cannot send blog posts from my cell phone.
UPDATE: I don't really understamd it but thnk I smply cannot send blog posts from my cell phone.
November 10, 2011
Much better today
A quick update: my feet are much better. Nurse Jacque spoke to Dr G and he recommended adding gabapentin back into the mix. I took the first dose around 5:30 PM and my feet began to feel better right away. I don't know if pain from neuropathy comes and goes or is constant. (Mine has been pretty constant so far, which is why yesterday's huge increase in pain was such a blow.)
I will monitor the gabapentin + Lyrica and call Dr G's office on Friday to let them know how I'm doing.
I will monitor the gabapentin + Lyrica and call Dr G's office on Friday to let them know how I'm doing.
November 09, 2011
Neuropathy
Normally I don't complain about pain. Other things, maybe -- I am a notorious kvetcher -- but not about pain. So when I say that the neuropathy has gotten much worse since Monday's chemo, I'm not kidding.
Yesterday was great. I had tons of energy, I could manage the neuropathy, all was right with my world. But last night the touch of the comforter on my feet woke me in the middle of the night. This morning I could hardly bear to put on shoes and walk the dog. My gait resembles a drunken sailor, lurching from side to side as I try to avoid putting pressure on my toes. My fingertips are so tender that I could hardly pull apart the press-close bag of dog treats.
In the last week I tapered off the gabapentin and started Lyrica, another drug used to treat the neuropathy. Based on my increase in pain, it doesn't appear to work for me. And it has already caused a three pound weight gain, an unwanted side effect of the treatment for the side effect.
I've called Dr G and told Nurse Jacque my tale of woe. She will talk with him and get back to me. In the meantime, I am getting back onto the sofa. It's about all I can do.
Yesterday was great. I had tons of energy, I could manage the neuropathy, all was right with my world. But last night the touch of the comforter on my feet woke me in the middle of the night. This morning I could hardly bear to put on shoes and walk the dog. My gait resembles a drunken sailor, lurching from side to side as I try to avoid putting pressure on my toes. My fingertips are so tender that I could hardly pull apart the press-close bag of dog treats.
In the last week I tapered off the gabapentin and started Lyrica, another drug used to treat the neuropathy. Based on my increase in pain, it doesn't appear to work for me. And it has already caused a three pound weight gain, an unwanted side effect of the treatment for the side effect.
I've called Dr G and told Nurse Jacque my tale of woe. She will talk with him and get back to me. In the meantime, I am getting back onto the sofa. It's about all I can do.
November 07, 2011
November 02, 2011
Scan results
The results of Monday's PET scan were good -- the liver mets are shrinking and there appear to be no new mets to report. My tumor marker came down from 89.9 at the end of August to 73 today. This is a slower rate of decrease than in the past few months but still a decrease.
Dr G says I should continue on the Abraxane/Avastin. When I reported the change in neuropathy from pain to numbness, and my fears regarding a fall, he told me that it would be a mistake to stop now while the cancer is clearly responding to the treatment. If I stopped or he decreased the dose, it might turn cancer cells partially responsive to this treatment into resistant cells. So I will start another cycle of this chemo cocktail next Monday, then re-test my tumor marker in a month. I'll also phase out the gabapentin and start taking Lyrica for the neuropathy. Maybe this new drug will give me better protection from increasing neuropathy.
I'll also have a follow up brian MRI in the next weeks. I am supposed to get this test every three months since the gamma knife follow up in August. I think I'd like to time this scan so that I can get the results when I next see Dr G without having to wait a long time for them.
All in all, this is the kind of good news I like to hear!
Dr G says I should continue on the Abraxane/Avastin. When I reported the change in neuropathy from pain to numbness, and my fears regarding a fall, he told me that it would be a mistake to stop now while the cancer is clearly responding to the treatment. If I stopped or he decreased the dose, it might turn cancer cells partially responsive to this treatment into resistant cells. So I will start another cycle of this chemo cocktail next Monday, then re-test my tumor marker in a month. I'll also phase out the gabapentin and start taking Lyrica for the neuropathy. Maybe this new drug will give me better protection from increasing neuropathy.
I'll also have a follow up brian MRI in the next weeks. I am supposed to get this test every three months since the gamma knife follow up in August. I think I'd like to time this scan so that I can get the results when I next see Dr G without having to wait a long time for them.
All in all, this is the kind of good news I like to hear!
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