Dancing With Cancer: Living With Mets, A New Normal

For Seattleites: I sing with Radost

2012-01-27T11:08:00.000-08:00

I'll sing with Radost at this one-of-a-kind performance. Earlier this week I heard the orchestra in rehearsal and not only do they sound terrific, they will do justice to Johnny's arrangement. Hearing these simple folk tunes, now beefed up with so many musicians instead of an eight piece folk band, was thrilling. My jaw dropped on the first chord.

(Only twice before have I performed with an orchestra, when I danced with the Zivili Kolo Ensemble of Columbus, Ohio. One piece was an orchestral setting of Pamela Lacko Kelley's "Wedding" choreography with the West Palm Beach Florida Symphony Orchestra. The second was to a performance of Enescu's Romanian Rhapsody #2 with the Columbus Ohio Symphony Orchestra. These performances were unique in my experience, until now.)

Please join the Radost Folk Ensemble in a Special Performance:

Radost at the Garfield Winter Waltz On the Blue Danube

Sunday January 29, 2011
7-10 PM

Grand Lobby at Benaroya Concert Hall

3rd Ave, between Union and University, in Seattle

The Garfield High School Orchestras invited Radost to be the guest performers at this year's annual Winter Waltz. Bring your dancing shoes so you can waltz and polka the evening away to one of the top student orchestras in the USA.

Radost will perform Pesme I Igre Iz Medimurje (Songs and Dances from Medimurje)

Traditional Croatian Music arranged for Orchestra by John Morovich. Music performed by the Garfield Symphony Orchestra, under the direction ofMarcus Tsutakawa. This special performace is dedicated to Mel Webb, and supported by the Mel Webb Memorial Music Fund.

Visit Radost.org for ticket information.

Tumor markers falling down, falling down...

2012-01-27T10:46:00.000-08:00

(Sung to the tune of "London Bridge is falling down")

Tumor markers falling down, falling down, falling down
Tumor markers falling down
That's just terrific!

Tuesday's labs showed that my CEA is stable at 4.4 (normal!). This is the tumor marker shared by both breast and ovarian cancers. My CA 27.29 has fallen again to 48.7. Normal is 38.6 and below, so I am only 10.1 points away from normal markers!

Second opinion results

2012-01-25T15:18:00.000-08:00

Dr G said yesterday that he thought the clinical trial at SCCA studying Vorinostat was worth a chance. It seemed to offer small risk and much to offer to help treat my cancer.

As far as my other fears, expressed here, I asked him to call the lead researcher, who he knows well, to advocate for the use of my port in the PET scans. Dr G also reassured me that he would be there for me if I needed emergency or other care while on this trial.

He recommended I move forward with the whole genome sequencing, as there may be benefit in learning if I could be treated with meds specific to gene therapy. It's the science of the future, right now!

Although I never received a copy of the letter Dr Gadi wrote regarding my visit to SCCA, Dr G gave me a copy. It's as my notes indicated: the Vorinostat clinical trial; combination endocrine therapy (two estrogen blockers given at the same time); and/or some chemo options.

The clinical trial coordinator and I keep exchanging phone messages. I hope to make the connection with her today and learn more about my eligibility. In the meantime, I am enjoying the additional energy that comes with not being on chemo and hope my feet continue to improve. My CEA tumor marker is stable at 4.4 and the CA 27.29 results should be available tomorrow.

Neuropathy redux

2012-01-24T10:49:00.000-08:00

My feet still bother me. For months I've taken gabapentin, L-glutamine powder, and vitamin B-6. After seven sessions of acupuncture I learned that my health insurance was only going to reimburse about 25% of the total costs, so I discontinued the acupuncture. We'd already spent more than $500 on this treatment and it wasn't clear that it was helping.

I still live with that zingy sensation in both feet 24/7. You know how when you bang your elbow and your funny bone zings? That's my feeling of neuropathy. Except that it never stops. Some times it's worse than others, but it never goes away.

I still have some numbness in my feet as well, but it's the zinging that annoys so greatly. During the day it's not as noticeable, probably because I am distracted by life. But in the evening, when I want to settle down on the sofa to read or watch TV, my feet really bug me.

I clipped an article from the paper about benfotiamine, a synthetic form of vitamin B-1 and will ask Dr G about it when I see him later today.

Sh*t people say to women with breast cancer

2012-01-22T13:00:00.000-08:00

Check out this video: Sh*t girls say to girls with breast cancer.

So, stop saying things like this, people! I certainly don't appreciate hearing sh*t like this. I especially detest "how ARE you?" when said with Bambi eyes. Uggh!

Still snowy in Seattle

2012-01-20T15:23:00.000-08:00

We've been snowed in most of the week, at least since Tuesday night. Although temperatures warmed up enough today to start the snow melting, this morning's walk was all the more treacherous with water on top of the snow and slush just starting to form. Rik has been at work clearing the gutters of ice so that water can run freely down the spouts. I've been cozy indoors. Thankfully we have power, so I've been able to do laundry, check email, write this blog, etc.

Rik and two dogs

We Seattleites just don't get enough snow to know what to do in it or with it. I am glad that the major streets are clear, but ours is still snowy, slushy and soon will be icy as we head into evening and the temperature drops. Plenty of people around town had a great time playing on Wednesday, but after three days of this, many (especially those with young children) are collectively at their wits' end.

I'm glad we went to the grocery store on Monday and have fresh food to eat all week. There's just enough produce and fruit to stretch until Sunday, by which time I am sure we will be able to get to the grocery store.

I've baked biscotti, made soup (mushroom-onion in beef broth with garlic toast), baked fresh bread. Hmmm, what pantry item shall I tinker with for tonight?

The only thing better than one Cavalier is.....two Cavaliers!

Update in the snow

2012-01-18T16:29:00.000-08:00

It snowed yesterday morning and so I cancelled my appointment with Dr G. However, the sun was shining brightly by 1 PM and I was sorry I had rescheduled for next week. That's when I will talk with him about the clinical trial and other options offered by my second opinion at SCCA.

We knew yesterday to expect a a huge load of snow today. Thankfully the Seattle school district was proactive and cancelled today's classes yesterday afternoon, so we went out for dinner and stayed up late with a clear conscience.

It started snowing in the wee hours of the morning. There are six inches on snow on our street, and the city is basically closed down.

Rik gave into his Canadian Quebecois training and shoveled the snow off our deck and from the driveway, steps and walkway. Later we went for a walk in the snow and bumped into many neighbors out enjoying the same good time. After we came home, Rik shoveled again. I baked some almond-black pepper biscotti and in the afternoon our friends from two houses over came by for hot cocoa and cookies. Now Rik is relaxing in front of the TV, I'm catching up on my blog, and soon I will make a big pot of soup for dinner.

That's what a snow day should be!

Yes, it does snow in Seattle

2012-01-15T13:20:00.000-08:00

It started snowing yesterday morning, took a break later in the day, and continues today. There is about an inch of snow on our street, with a layer of ice underneath.

I'm all bundled up to take a walk

Bob checks out the greenery under the snow

The Vorinostat/FES clinical trial

2012-01-14T14:46:00.000-08:00

Here's what I understand about the Vorinostat/FES phase II clinical trial, called Vorinostat in Treating Patients With Stage IV Breast Cancer Receiving Aromatase Inhibitor Therapy. Vorinostat, which the FDA approved to treat other cancers, is thought to resensitize estrogen receptors so I can benefit from an aromatase inhibitor again. (AI's are the drugs I took for the first seven years of living with mets.)

First cycleWeek 1
Baseline FDG PET (sugar-based glucose tracer) and FES (fluoroestradiol) scans, EKG, doctor visit
Begin Vorinostat (oral medication)

Week 3
FDG PET (uses a sugar-based glucose tracer) and FES (fluoroestradiol) scans, doctor visit
Discontinue Vorinostat, begin aromatase inhibitor (AI)

Week 8
FDG PET (uses a sugar-based glucose tracer) and FES (fluoroestradiol) scans, doctor visit
Discontinue aromatase inhibitor (AI)

Second (and subsequent) cyclesWeek 1
Begin Vorinostat (oral medication)

Week 3
Discontinue Vorinostat, begin aromatase inhibitor (AI)

Week 8
Discontinue aromatase inhibitor (AI), doctor visit, possible scans

As I understand it, this means a larger risk of exposure to radiation in the first cycle due to all the imaging. The 30-40% risk of side effects for Vorinostat including fatigue, diarrhea, nausea, vomiting, loss of appetite, weight loss, elevated blood sugar, altered taste, dry mouth, hair loss, constipation, muscle spasms, limb swelling, dizziness, headaches, shivering, fever, itching, kidney problems, cough, upper respiratory infection, lower number of red blood cells (anemia), lower platelets. These are mostly side effects associated with chemo that I have already experienced.

The study has enrolled four patients so far, of whom one was not helped by the treatment and dropped out of the study. The other three are in their third or fourth months os the study with manageable side effects so far. The study will enroll a total of 20 patients.

I need to contact Premera, my health insurance company, since the trial will not pay for standard labs, doctors' visits or the AI drug. I do not know if Premera will pay for any services at SCCA, since I normally receive my care through Swedish Medical Center and Minor and James Medical. The trial will pay for the Vorinostat, the baseline FDG PET scan, the interim FDG PET scans, and perhaps the concluding FDG PET scan. The trial covers all the FES PET scans.

This is also important, because if I enroll in this trial, while I am a participant, in the event of an emergency I would have to seek care at the UW Hospital. A close friend had terrible experiences there and I am not eager to find out for myself what that might be like.

During at least the first eight weeks of the trial Dr Gadi at SCCA would take over my care. He would keep Dr G in the loop, but Dr G would not be the main player as he has been since 1999. I would only enter the trial with Dr G's full support, but I also want to be able to return to his care after the first eight week cycle.

I asked the research coordinator to determine if SCCA would be able to use my power port for the PET scans. Since I have lymphedema in my left arm, I can't imagine having enough good veins in my right arm for a tech to be able to start IV lines several times in the course of a single week, or over two or eight weeks.

That's a lot of information. This is a big decision. Are there other questions I need to ask?

The second opinion

2012-01-14T14:07:00.000-08:00

Last week I met with Dr V K Gadi of Seattle Cancer Care Alliance (SCCA) for a second opinion on next choices. Here's what he had to say:

My cancer is "indolent," that is, slow-growing. It's taken 13 years to get to this point from my original diagnosis in 1999. That also means it can be harder to treat with chemotherapy since these meds attack faster-growing cells. And I get the side effects even if the chemos aren't as effective on my slower-growing cancer.

My treatment began with aromatase inhibitors (AI's) and other estrogen fighting drugs, lasting for seven years. High dose estrogen and use of two AI's such as Faslodex and Aromasin are possible treatments.
Side effects from chemotherapies present more of an issue than the chemos themselves. Xeloda may still be a possibility, even though Dr G has been reluctant to prescribe it, given my hospitalization in 2009 when taking 5FU. (Xeloda is the oral form of 5FU.)

Targeted/biological agents, such as Avastin could be (and have been, in the case of Avastin) included in my treatment plan.

We should retest my DNA to see if I carry the BRCA1 and/or BRCA2 genes. Whole genome testing might not have been available in 2003 when I had this done and things have changed in the interim years.

There is a clinical trial I am eligible for, of Vorinostat with an AI and imaging. This trial tests both the efficacy of Vorinostat for metastatic breast cancer (the FDA has already approved it to treat other cancers) and the efficacy of a fluoroestradiol scan (FES). As I understand it, the FES is similar to a PET scan but without the glucose solution.

I'll outline the trial in my next post. But first I have to vent a bit about SCCA itself, since the trial would require my receiving care there for at least eight weeks. Bearing in mind that I don't handle change well these days, here are my impressions of SCCA:

Of the four individuals I met, only one person, the teaching fellow, offered her name first in greeting me (as in, "Hello Ms Cohen, my name is _______.") The PA who took me to the office, Dr Gadi, and the research assistant for the clinical trial did not. The PA simply stood over me while I was in the waiting room. When I noticed a pair of legs in front of me and looked up from my book, she said, "Ms Cohen? I'll take you up to see Dr Gadi." I had to ask, "And your name is ....?" Dr Gadi bounced into the exam room talking about treatment options. I had to interrupt him to say, "You must be Dr Gadi." The research coordinator and I met in the hallway, and I was the first to ask, "Are you looking for me?" Not a good way to welcome a patient.

While waiting to be seen, I couldn't log into the SCCA wifi network. This may seem petty, but if that's what helps make the wait seem faster, or if I need to be in touch with someone via email, not having access to wifi is extremely annoying. I spoke with a man who was working on his laptop, and he said he frequently could not log onto their system.

SCCA is affiliated with the University of Washington, and so residents/teaching fellows (maybe this isn't the proper term?) participate in seeing patients, under the supervision of the treating physicians. I recalled from my previous visit a year or so ago that I would see a fellow before I saw the oncologist, so I was prepared for my appointment to take an additional hour.

As I expected, the teaching fellow came in first. She reviewed my history and then was unable to locate the most important page in the box of medical records I hand-carried in the prior week: the chart Dr G made with all the chemos I'd taken, when I began and why I'd stopped taking them. I had carefully placed this paper on the top of the entire box of 250+ sheets so that the doctor would see it first. Neither she nor I could find it in the pile, and she had to ask the secretary to call Dr G's office to ask them to fax another copy. This inattention to detail frustrated me.

Dr Gadi was so excited to find another patient who would qualify for the Vorinostat trial that he set up a meeting with the research coordinator for that same day. I spent another hour-plus waiting for the research coordinator and then talking with her. I am glad we spoke, because she was able to answer many of my questions. But I had not prepared to spend more than three hours at SCCA.

Something about SCCA just rubs me the wrong way. I'm sure the people are perfectly pleasant, but both my experiences left me stressed, annoyed, frustrated, and out of sorts. I was so pissed off and tired from the long day that I couldn't focus at rehearsal that night and inevitably, took out some of my frustrations on my friends in Dunava. So regardless of my eligibility to participate in cutting-edge science, regardless of how I might benefit from this new, experimental treatment, I have to ask myself if it will be worth this level of frustration. So much will depend on what Dr G thinks and if my health insurance company will fund the lab work and doctors' visits. But it will really come down to if I can stand going to SCCA.

The latest

2012-01-12T16:54:00.000-08:00

All is good, I just haven't had time to blog about the visit to SCCA, the neuropathy, etc. I hope to get some real time to write on Friday. Until then, be assured that I have good energy, my feet are incrementally better, and the doc at SCCA offered some very intriguing options.

FYI my latest labs indicate the my tumor markers are down even more. CEA is at 4.4, only 0.1 above normal. CA 27.29 is at 56.4 (normal is below 38.6). Good news!

My Nanny

2012-01-07T15:21:00.000-08:00

Esther and Joe, 1940
Note how she
shows off her legs!

Today is the 30th anniversary of the death of my maternal grandmother, Esther Aaronson Poppel. I know this because my mom mentioned last week that she had a yahrzeit coming up. (Yahrzeit is the Yiddish word for the anniversary of the death of a loved one.) I asked my mother to consult Nanny's death certificate, did a little math, and indeed, it's been thirty years.

I'm named for my maternal grandfather Joseph, who died before I was born. So my grandmother was widowed young and never remarried. She was a constant presence in my earliest years, before we left New York. When we moved to Cincinnati, Nanny took her own apartment in Yonkers.

1961: I am 2 years old
and my sister is 6 months

Nanny came to visit us every year for a month at a time. We carried on with our usual lives. Mom and Dad worked, my sister and I went to school, and when we came home, Nanny was there. She was a diabetic and so we always had special treats when Nanny came to visit.

My grandmother also had breast cancer. I don't know how old she was at the time of her diagnosis, but she had a mastectomy. I once saw her breast form drying in the bathroom and it took me a long time to figure out what it was. We never discussed her health, and she lived a long time after her cancer treatment. She was in her 80s when she died. A look at her birth and death certificates reveal that she was a few years older than her husband, a secret she never told my mother.

After Nanny's funeral, my mother told my sister and I that we could take any one thing from her apartment as a memento. I had always been fond of a purple glass sugar bowl and creamer and still have it after all these years, although the sugar bowl is chipped. (I found a similar set for sale here, although my creamer has a purple handle and the sugar bowl has no lid.) Evidently I have good taste - this is now a valuable collectible. But for me it's a memory of my beloved grandmother.

The latest

2012-01-04T16:18:00.000-08:00

Dr G says that we have the ideal doctor-patient relationship. He really listens to me, and I pay attention when he asks me to do something. And then he said he had to give me a hug.

At today's appointment, he asked how I was doing and indeed listened to every complaint about the neuropathy in my feet. I told him I have an opportunity to dance at the end of January, and he said he loves how I set these small goals to achieve.

So he will not put me on any new treatment yet, and even if I go back on chemo, he will avoid the taxanes which gave me this terrible neuropathy. He mentioned carboplatin in passing, but will not make a recommendation yet.

Dr G also prepared a list of all the chemos I've been on (except the CMF in 1999) for Dr Gadi at SCCA, who will give us a second opinion. Dr G wants someone else to talk to about my case, and I heartily agree that he should have someone else to talk to about me. I then picked up a small box with my medical records going back to August 2002: labs, radiology (i.e. scan) reports, surgical reports, lymphedema and other notes from providers. Dr G reviewed this mass of material and says most of it is garbage, but I faithfully dragged it all over to SCCA and left it for Dr Gadi to examine before next week.

Here is my whole cancer treatment history (since mets diagnosis in 2002, and except surgery and radiation):

DRUG WHEN WHY DISCONTINUED

Femara 2002 progression

Lupron | progression

Faslodex | progression

Tamoxifen | progression

Arimidex | progression

Aromasin 2009 progression

5FU 4/2009-5/2009 toxicity (neutropenic fever,typhilitis)

Megestrol 6/2009-4/2010 progression

Abraxane 4/2010-6/2010 toxicity (counts, SOB, progression inliver)

Doxil 6/2010-7/2010 toxicity (hand/foot, mucositis)

Adriamycin 8/2010-10/2010 progression

Faslodex 10/2010-12/2010 progression

Navelbine 1/2011-2/2011 biochemical progression

Gemzar 2/2011-4/2011 counts, biochemical progression

Avastin 5/2011-12/2011

Abraxane 5/2011-11/2011 neurotoxicity

Taxol 12/2011 neurotoxicity

Resolutions

2012-01-03T18:34:00.000-08:00

I said on Facebook that my new year's resolution would again be to eat fewer carbs and less sugar*. Despite my good intentions, I am still addicted to both. So as a way to keep myself honest, every so often I will post about what I ate. And since Rik teaches on Tuesday nights this quarter, we eat dinner very early, making this is a good opportunity to share (tattle).

Breakfast One egg scrambled in the microwave, a slice of rye toast with soy margarine, some of a decaf "mocha" made with one piece of 88% chocolate and the daily half water/half tart cherry juice mixed with L-glutamine powder. (Tart cherry juice is supposed to help with the neuropathy. I do so much that is supposed to help with the neuropathy that I don't know what works and what doesn't.)

Lunch (I was a bad girl but there was no time to eat anything healthier) Fast food burger but no bun, small fries, glass of water.

Afternoon snack The rest of the morning's decaf mocha, one spoonful of peanut butter.

Dinner (I think I excelled here) Six Brussels sprouts roasted with olive oil and salt until crunchy, a quarter of a baked sweet potato spread with the soy margarine, halibut spread with mustard and mayonnaise to keep it tender, a glass of viognier.

Then I couldn't help myself. The Graeter's ice cream a friend brought over was calling to me. The other day I accidentally left the freezer door ajar for a few hours, and I just had to do a quality control test. After ten or twelve tiny bites of the chocolate-chocolate chip, I'd had enough.

So much for new year's resolutions. Still, I try to keep everything in moderation. I have so much going on that I can only control and limit my diet to a certain degree before my frustration level escalates. And a daily dose of vitamin CH helps me a lot.

* About two years ago Dr G told me he'd been thinking about PET scans and cancer. 24 hours before a PET scan one stops eating carbohydrates, then fasts for 12 hours before the scan. The glucose and radioactive dye injections measure activity -- the more active the cancer, the more it "lights up" on the scan. Dr G said this made him believe that carbohydrates fuel cancer cells, and so he recommended I eat fewer carbs and less sugar. Note he said "fewer," not none.

What neuropathy feels like

2012-01-02T12:09:00.000-08:00

I have another metaphor on what neuropathy feels like. Imagine that my feet are tiny boats, with the hull under the water (the sole of my foot) coming down to a point. that's the part I walk on, so it feels like extra, painful pressure on the center of my foot (and my toes).

Happy new year

2012-01-02T12:07:00.000-08:00

As the founder of my online support group said in a post yesterday, "We are still here!"

That alone seems reason to celebrate. When you live with metastatic cancer, you never know if a certain day will be your last. Holidays can be especially tough Who wants to imagine that this is their last birthday/family celebration/New Year's Eve?

And somehow, despite this ongoing fear, we move forward. Yes, it might be the last time to do _____________ (you fill in the blank). I, however, prefer to live in the moment. I experience the nostalgia and sorrow, that this might be the last time, and then I remember that everyone is in the same boat. None of us knows when is our last holiday, our last family visit, our last you-name-it. It's just that people with cancer feel the likelihood more acutely.

And with that, here are some selected moments from the past few days of new year's celebrations:

Shabbat dinner with friends who truly appreciated a home-cooked meal (especially the kid, who almost never gets to eat kosher chicken!)

New Year's Eve day lunch at Blueacre Seafood with friends who know the chef. Chef Kevin Davis came out for a visit several times during our meal. Meeting the chef, that's a treat!

Low-key dinner with yet more friends and a relaxing, non-competitive Scrabble game. At one minute to midnight, we realized the radio was playing Auld Lang Syne and that it was time for the ritual Happy New Year greeting and kiss.

Shopping!

Watching an oldie but always goodie, A Fish Called Wanda, with our regular Sunday night dates G and W, followed by Indian food for dinner. Our wonderful server let us sample several beers, and the kitchen offered us a piece of baklava still warm from the oven.

With such a sweet start to the new year, I feel refreshed, rejuvenated and ready to start 2012.

Space, the final frontier

2012-01-01T11:36:00.000-08:00

A friend just shared this link. with me. If you need a laugh to start off your new year, this is the one!

Carol Burnett Show "Star Trek" parody

So far, so good

2011-12-30T09:56:00.000-08:00

Yesterday's acupuncture treatment may have begun a revisal trend in my neuropathy -- or at least helped me tolerate it better. The acupuncturist placed two needles below my ribs, two along my collarbones, two in my feet (he left those in place for about 30 minutes) and two in my right hand. Evidently the needles that stayed in place for some time were sedating, or at least I fell asleep and when Dirk came in, he seemed pleased that I had dozed off. I came home feeling more energized and was able to make dinner and putter around the house.

This morning I awoke early (for me) and made waffles for breakfast, changed the sheets on the bed, started some laundry and am about to go to the grocery store.

It's not that my feet really feel better, but more that I am able to tolerate the discomfort.

I thought of another way to describe neuropathy. When I curl my toes against the balls of my feet, it feels as though my feet are swollen and tender. But when I examine them, that's not the case. My feet appear totally normal. That's the thing about nerve pan -- it's not visible.

And that's the thing about disabilities. They're not always visible. You can't see my cancer. You can see the side effects of the treatment, such as baldness. But cancer itself is invisible to the naked eye.

More on neuropathy

2011-12-29T11:27:00.000-08:00

Although Tuesday was a good, high-energy day, yesterday my feet troubled me even more than at the end of last week's first dose of Taxol. I hobbled to lunch with a friend and tried to wander in a bookstore. After about 30 minutes I simply had to sit down. Getting home and putting my feet up for hours didn't help. By 10 PM I was practically in tears with frustration about the whole thing. I took some lorazepam, got into bed, and tried to forget the situation. Unfortunately, I still woke up with the same level of neuropathy.

Why does this neuropathy bother me so much? It makes me feel helpless when I have trouble moving around the house, much less trying to go out, walk the dog, drive the car, run an errand, cook a meal -- the really simple things in life that can be so easy to take for granted.

Part of my neuropathy experience feels like constant pins-and-needles tingling. That might not sound so bad, but remember, I said "constant." As in, no break: 60 seconds a minute, 60 minutes an hour, 24 hours a day, seven days a week. There is no escape from this tingling, a relatively low-level annoyance whose inescapability grates hard.

On top of the tingling there's the numbness. Parts of my feet, from the toes, through the ball of the foot and onto the heel, simply have no sensation. That means I need to be extra careful about tripping or losing my balance, since I might not be able to feel the floor beneath me well enough to correct my posture should I stumble. And I can't risk breaking a bone in a fall. This is why my gait is so rough. I lurch around the house from numb spot on one foot to another numb spot on the other foot. As a safety precaution, we've taken up all the floor rugs except one small one. The floors may be cold, but there is less for me to potentially trip over.

I hope that today's acupuncture appointment will bring some relief so that I am more able to live my life. After all, the dog needs a walk, and so do I.

Better today

2011-12-27T16:43:00.000-08:00

Not having chemotherapy yesterday has given me more energy today. Despite awakening at 3:19 AM and being unable to return to sleep, I caught up on email, walked the dog for the first time since Thursday, swept the floors, ironed a half dozen of Rik's shirts and we went out to see a matinee. A much better day!

Yesterday at the local Fred Meyer (everything-cum-grocery store), I picked up a pair of sheepskin fleece lined bedroom slippers at a highly reduced price. The toasty warm slippers make my feet feel so much better, and the left shoe easily accommodates my old lift. The slippers are fully soled in rubber, so I don't slip on the wood floors. My feet are still numb, but I am moving around more easily since they are warm. I am so glad I thought of fleece.

What we did on December 25th

2011-12-26T11:51:00.000-08:00

In order to better understand what we did on December 25th, when most of the rest of America celebrates Christmas, see this blog post.

Although I had a lot of discomfort with my feet and didn't have the energy to be on my feet in the morning, we did join our friends at 2 PM at Chiang's Gourmet for a Chinese feast. Here's what we ate, all pre-ordered the savvy host with our terrific waitress friend Mabel:

vegetarian spare ribs

green onion pancake

fried dough sticks with soy sauce and sugar (just like Beijing street food, says Rik)

baked buns with eggs

vegetarian mu shu

salt and pepper whole fish

honey walnut prawns

rice cakes with edamame, mushrooms, greens

green beans with garlic

basil chicken

tea smoked duck

It didn't come in this order. At Chiang's they bring your food in the order it's freshly cooked, not necessarily in the order you placed it. I don't know why this is the case; no other Chinese restaurant seems to work this way, but we like the food there, so we keep going back despite being served out of order.

The restaurant was crowded when we arrived, with the last of the lunch rush leaving. That gave the staff a short break and the noise level dropped enough that we could talk with one another around our very large round table. Next year maybe we should go just a little later at 3 PM. By 4:00 it was starting to fill up again. Finding the right time to go out on Christmas Day is always challenging. At dinnertime, the place is too crowded to be comfortable, and I gather lunch was the same way. Mid-afternoon appears to be just right.

After a totally yummy late lunch, everyone came back here to hang out, relax, play board games, shmooze and have dessert. It was D's birthday, so we ate chocolate cupcakes, pumpkin pie with fresh whipped cream, ginger cake and the leftover apple torte from Friday night. And coffee, and tea, and sparkling cider. The teens played Milles Bournes with Rik and watched a movie while the adults kept talking. The last friends left around 8:00, Rik and I cleaned up a bit and settled down on the sofa with Bob the dog to watch the re-run of PBS's "Downtown Abbey."

No treatment today

2011-12-26T11:36:00.000-08:00

This morning chemo nurse talked to Dr G about the increased neuropathy in my feet He agreed that the Taxol was too toxic too quickly and cancelled my treatment for today. In a brief phone chat we talked about regrouping to try something else. I see him next week, and have my second opinion at Seattle Cancer Care Alliance on January 11. Hopefully two weeks without treatment, and with acupuncture, will bring some resolution to my feet.

Taxol update

2011-12-25T11:14:00.000-08:00

Last week's first dose of Taxol was both more and less than what I anticipated. The side effects are more; the dose itself, not so bad. No nausea, fatigue only as it relates to lack of sleep. Hair loss will occur (again! three times since April) in a few weeks.

Taxol is given with steroids twice on the day before treatment, three times the day of and again twice the day after treatment. That meant three nights of limited sleep for me, even with Ambien and lorazepam (Ativan) to help. I think I averaged four or five hours each night on Monday, Tuesday and Wednesday nights.

On Thursday night I figured I'd better try to sleep without medical aids. That didn't last too long. A bit of lorazepam at 2 AM helped me get the same four or so hours of rest. Friday and Saturday nights were repeats, minus the lorazepam because I really am extremely stubborn. I still felt as though I hardly slept and spending an extra hour or two in bed after 7 AM barely helped me function. Today it all starts over again, as I am scheduled for treatment tomorrow and have already taken today's first dose of steroids this morning.

I believe the acupuncture was beginning to help with the neuropathy in my feet. How could I tell? Because by Friday afternoon, my feet felt just like they had after my last Abraxane treatment -- painfully tender, pins-and-needles all the time with no relief. Saturday was better until the evening when the discomfort bothered me greatly. And I awoke this morning with the same feeling as on Friday afternoon, even after being off my feet for 8+ hours in bed. It's acutely uncomfortable for me to stand or walk. Even sitting or lying down brings no relief.

I expect to bring all this to Dr G's attention asap. Perhaps tomorrow, since he is on call and with few other patients in the way I may be able to speak with him directly or at our next appointment in a week.

In the meantime I am worried that if one dose of Taxol caused this much discomfort, the second dose will keep me housebound. Plus, of course, the lack of sleep that I anticipate having to go through this week. That may make for two straight weeks of poor and limited sleep at night, leading me to suspect that Taxol, even if effective, may not be tolerable.

A thought to live by

2011-12-21T10:36:00.000-08:00

George Bernard Shaw said:

Life is no "brief candle" for me. It is a sort of splendid torch which I have got hold of for the moment, and I want to make it burn as brightly as possible before handing it on to future generations.

On this Solstice Day, also the first day of Chanukah, Shaw's quote struck me powerfully. After yesterday's first Taxol/Avastin treatment, which seems to be tolerable so far, I hope to continue to burn my torch as brightly as possible for as long as I am given to hold it.

Chemo mantra

2011-12-20T08:09:00.001-08:00

I am scheduled to start Taxol this morning. Let's all say the chemo mantra so that it will be:

Highly effective
Very tolerable
With minimal side effects

"In my own little corner"

2011-12-19T17:08:00.000-08:00

I hope having chemo on Tuesday, and my third dose of steroids on Wednesday, increases the chances of my feeling well enough to see the local production of Rodgers and Hammerstein's "Cinderella" on Wednesday night.

I'll attend this much-anticipated treat with a friend who also knows all the words to all the songs from our mutual annual childhood viewings of the televised version with Lesley Ann Warren.

The original 1957 broadcast, written for Julie Andrews, took place before I was born, but I did manage to find an audio recording of it to put on my iPod and have reserved a copy of the DVD from the Seattle Public Library.

Chemo rescheduled for tomorrow

2011-12-19T17:07:00.000-08:00

We arrived, as planned, one hour before my chemo appointment for labs, only to learn that Dr G was supposed to order dexamethasone (Decadron), a steroid taken for three days while on Taxol -- the first day being the day before treatment. There was some conversation about whether I should have Abraxane today instead, but eventually common sense won out.

Dr G ordered the Decadron, which we picked up at our pharmacy. I take it twice daily for three days. I will receive the first dose of Taxol tomorrow, the second one next week, and see Dr G the first week in January, all as planned. The Taxol will likely be given once a week for two weeks, and the third week off, so the planned schedule fits this pattern.

Although this mixup basically destroyed plans for two days, I was able to use the time waiting at the Cancer Institute well. I wrote several thank you notes for last week's Dunava concert and Beth Shalom brunch and came home with most of the items on my to-do list checked off. And you know I put things on the list just to be able to check them off!

Rik moved a tall table back into our living room so that I can set up our menorahs for Chanukah, which starts Tuesday night. I don't know if I will feel up to going to dinner at friends tomorrow night. It's too soon to predict how the chemo will hit me or how the steroids will help.

Tumor markers have fallen

2011-12-16T17:43:00.000-08:00

I had a very pleasant surprise yesterday. I called Dr G's office to ask for my most recent tumor marker labs, taken on Tuesday, but not ready in time for Tuesday afternoon's appointment. Nurse Jacque told me the CA 27.29 (for breast cancer) had fallen from 90 last time (not even three weeks ago) to 69! And the CEA (for breast and ovarian cancer) was now at 5 -- practically normal!

You can imagine the scene. I'm doing the happy dance, Jacque is congratulating me, and Dr G wanders over to find out what's the noise is all about. Then I hear him saying how wonderful it is -- "but you still start Taxol on Monday."

If it works, I'm willing to start it!

I love flash mobs

2011-12-16T10:49:00.000-08:00

If there was ever a singing/dancing event I lusted to participate in, it would be a flash mob. There's something about the (seemingly) random, spontaneous and joyful movement when people sitting at a cafe suddenly erupt into song and dance that gets me almost every time.

Click here for a new favorite: a crowd of Israeli shoppers at the Mamilla Center Mall dance to two of my favorite tunes from the 60s and 70s. Hearing these songs took me immediately back to my days at Camp Tel Yehudah, when we sang after every lunch and dinner during each month's camp session.

Why does it seem to be only in Israel that flash mobs sing about peace?

Pit'om kam adam baboker
umargish shehu am umatchil lalechet,
ulechol hanifgash bedarko kore hu 'Shalom'

(Lyrics Amir Gilboa; music Shlomo Artzi and Gidi Koren)

Suddenly a man wakes up in the morning
He feels he is a nation and begins to walk
And to all he meets on his way he calls out 'Shalom!'

And by lyricist David Barak:

Shalom, shalom
shalom al Israel
Imru, imru shirey hallel
Shalom, shalom al Israel

Peace, peace upon Israel
Let's sing songs of praise
Peace, peace upon Israel

Next up ...Taxol

2011-12-14T17:50:00.000-08:00

I saw Dr G yesterday and we had a long discussion on what treatment I should take next. We talked about the results of the recent annual San Antonio Breast Cancer Symposium. The most interesting part to me was the research on Afinitor, a drug which is supposed to increase the effectiveness of aromatase inhibitors. I'd really like to try this combo, partly to get off chemo and partly because my very estrogen-sensitive cancer responded well for seven years to these drugs.

Bloomberg BusinessWeek reports:

In a second study, another drug long used in organ transplants but not tried against breast cancer -- everolimus, sold as Afinitor by Novartis AG -- kept cancer in check for a median of 7 months in women whose disease was worsening despite treatment with hormone-blocking drugs. A comparison group that received only hormonal medicine had just a 3-month delay in disease progression.

Afinitor works in a novel way, seems "unusually effective" and sets a new standard of care, said Dr. Peter Ravdin, breast cancer chief at the UT Health Science Center in San Antonio. He has no role in the work or ties to drugmakers. Most patients have tumors like those in this study -- their growth is fueled by estrogen.

So Dr G will start the wheels turning with my insurance company to see if Premera will approve Afinitor for me. it's extremely expensive -- up to $10,000 a month -- so who knows?

Another finding indicated longer toime until disease progression with two aromatase inhibitors, anastrozole (Arimidex) and fulvestrant (Faslodex). I've taken both of these, but never together. I did try the high-dose Faslodex reported last year, and it was not effective, so we're not sure if this will help me or not.

MedPage Today reports:

"Over the years, our treatment approach for such women with metastatic breast cancer has been sequential use of as many hormone therapies as possible, keeping metastatic disease under control for as long as possible. These findings may allow us to change our approach. In this group of heavily pre-treated patients, all of whom progressed on prior endocrine therapy, the addition of this mTOR inhibitor resulted in significant prolongation of progression-free survival and an improved response rate, with only a modest addition of toxicity," said Hortobagyi.

In the end, we decided to go ahead with Taxol, a chemotherapy related to the Abraxane I've been on since last April. It's actually the same drug, delivered in a slightly different manner. You can read more about Taxol here.

I ought to tolerate it as well as the Abraxane. It's given weekly, and at least at first with Benadryl (to prevent an allergic reaction) and with steroids (to ease the reaction). Luckily, Rik is off for school vacation these next two weeks, so he will be able to drive me, etc. since the Benadryl will prevent me from driving myself. Then I see Dr G in the first week of January. If I tolerate the Taxol, I'll continue on it. If not, we will see what we will see. He's got a lot of tricks in his pockets.

Finally coming up for air - Dunava concert

2011-12-12T15:41:00.000-08:00

Now that ;ast week's craziness is complete, I can finally sit back and relax before leaping into the next thing, whatever it might be.

Friday night's rehearsal for the Dunava concert went well. We rehearsed all our entrances and exits, who was going to move chairs and microphones when needed, etc. The sound checking was fine, except that by singing through every song in the entire program the night before the concert. I may finally have over-sung.

I woke up Saturday morning feeling like a baritone. At synagogue I sang very softly, just to awaken my voice. I didn't stay for the kiddush lunch, but instead got a cup of hot water and greeted people on my way out the door. I tried to nap and fell soundly asleep for about an hour. Then I ate dinner at 4 PM (!) by carb-loading on leftover manicotti, dressed and did my makeup, and we walked out the door at 5:00. As we arrived at the store to pick up the flower bouquet for Dina and extra roses for each member of the choir, I realized I had left my skirt hanging at home. Rik drove back to get it, I bought the flowers, and we still arrived more or less on time at the theatre.

I think the concert was a smash success. The stage was dressed beautifully, like a living room in some Old World country, with colored rugs on the floor, lanterns, Bulgarian survachki, and tables and chairs. This was the brainchild of S, one of our biggest supporters and an extremely creative person, who was also the house manager and volunteer coordinator. My dear friend D, our stage manager, managed to set things up and keep us running smoothly.

There were about 225 people in the audience, around 125 more than we had pre-sold tickets. As we ran off the stage after the first half, we jointly exclaimed, "That felt like it lasted ten minutes! Are you sure it was the whole thing?" Indeed, we had sung for 40 minutes straight. The second half featured duets, trios, and small ensembles as well as the whole choir. We ended with a bang (literally -- from the tupan), ran offstage and were immediately called back on to sing an encore. Dina loved her bouquet and the choir members were surprised to each receive a rose as well.

After the show I was greeted by each aspect of my personal world. Dr G and his wife attended. He has a longtime love affair with Bulgarian music and he seemed very pleased with the concert. He even gave me a hug. To members of my cancer support group came with their spouses. Some of my closest friends were there, and several friends from my synagogue. Plus all those former Radosties and other folks from the folk dance world. And Rik and his "other mother" S who came in especially to hear us sing. All in all I loved having my own personal fan club!

Maybe I will be able to post photos and a recording sometime soon... no promises.

Still doing too much

2011-12-08T10:58:00.001-08:00

I am still doing too much but don't seem to be able to stop.

Yesterday I cooked that lunch for the synagogue office employees, to thank them for all their hard work. I made zucchini minestrone, mushroom spread, stuffed manicotti, green salad, and that chocolate-dried cranberry cake with freshly whipped cream. We had a lovely time together, and of course they were all helpful guests in terms of serving the soup and clearing the table. Even loading the dishwasher!

That left me ready to go to a quick Hadassah meeting on the west side of Seattle. I talked over tea with a long-time Hadassah member and an event planner about an activity to honor Hadassah's 100th anniversary in 2012. We came away with lots of good information to share with the rest of the local centennial committee.

Then rushed back over to my side of town to try on a friend's top to wear at Saturday night's Dunava concert. Hers didn't work, but one of mine ddid. Sometimes you just have to have a friend's eyes be the judge!

I came home and before I crashed on the sofa, put some turkey thighs into the oven to roast with a couple of sweet potatoes. When I awoke from my nap, dinner was done. We ate and then I ran out the door (again!) to rehearsal.

Dunava sang for almost three hours. Both our guest artists were there to rehearse: Jen Morris of the Georgian group "onefourfive" and musician David Bilides. It was a fun but long rehearsal.

Today is not as full -- I have my support group this afternoon and a synagogue meeting tonight. Tomorrow a morning meeting, followed (I hope) by yoga, and an evening tech rehearsal at MOHAI. And then Saturday's big concert!

I hope some of my local friends can be there on Saturday night at 7 PM to hear Dunava sing. (you can buy a ticket online here.) We will record the concert but we will likely use the recording to help us improve, not release it for the public.

Doing too much

2011-12-06T18:05:00.001-08:00

As usual, when I feel good I do too much. Today I was off to the acupuncturist (and arrived too early). Next was a meeting at the synagogue. After a quick lunch at home, yay leftovers, I picked up Rik and took him to the dentist. From there I drove to the grocery store for a few things. I bought a pound of coffee at Tully's and they offered me a free tall drink -- that was clearly the highlight of my day!

I picked up Rik again after his dental appointment and came home. I baked a cake for tomorrow's lunch for the synagogue staff, then made manicotti for dinner. I spent a few minutes on Facebook while the cake was in the oven.

In between I am listening to the music for the upcoming Dunava concert over and over again, doing some additional promotion for the concert, helping with the set design, recruiting volunteers. On top of that I need to spend some time on the phone about synagogue matters. And Tuesday is our date night to watch NCIS.

I felt stressed all afternoon until the free mocha at Tully's. Chocolate always helps. Now I feel on top of stuff again.

I expect to crash hard tonight -- at least there was no Dunava rehearsal today!

Musing on mortality

2011-12-03T15:12:00.001-08:00

I've blown through five chemos in the past year (Abraxane, Doxil, Adriamycin, Gemzar and Navelbine) and there are about six still available, including one I received in 1999 at my original diagnosis. This scares me. I don't want to face that I might be in constant chemo until all options are gone Yet no chemo has put me far enough into low tumor markers that I've been able to take a break for more than a week.

Dr G, however, appears to still be optimistic. Maybe I just have to learn to live with yet another "new normal" of being in constant chemo. On the other hand, he wants to see me in two weeks. That's much shorter than the usual month between visits. He said he doesn't want me to go without some kind of treatment for more than two weeks.

On the other hand, (I know, that makes three hands, but who's counting?) life has been relatively as usual and as long as I can continue to get around, drive, volunteer, sing in my choir, cook etc. I am fine with being on treatment. My ability to bounce back is still there.

But I am afraid of what may be coming, what I've seen in so many others with metastatic cancer: loss of mobility and independence, my world getting progressively smaller, more and more toxic side effects.

We just lost a young member of my local support group, and a member of my online group recently lost his wife. This makes me more conscious of impending mortality.

What Jews do on Christmas

2011-12-02T08:30:00.001-08:00

It's a little early for this, but I couldn't resist sharing it.... thanks to P!

Dr G says....

2011-11-29T17:10:00.001-08:00

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.

Jill and Mom canoodling with Bobka

2011-11-28T14:38:00.001-08:00

Dunava in concert!

2011-11-28T14:10:00.001-08:00

FOR IMMEDIATE RELEASE NOVEMBER 27, 2011

SEATTLE BALKAN WOMEN’S CHOIR TO SING EASTER EUROPEAN SONGS

DUNAVA IN CONCERT

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

2011-11-28T14:01:00.001-08:00

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.

What I am thankful for

2011-11-25T12:20:00.001-08:00

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.

"You're a singer"

2011-11-22T10:06:00.001-08:00

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."

Today's chemo

2011-11-21T19:37:00.001-08:00

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.

Back online

2011-11-21T18:43:00.001-08:00

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!

Brief update

2011-11-18T14:18:00.001-08:00

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.

Side effects update

2011-11-16T10:37:00.001-08:00

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.

Happy birthday to me!

2011-11-15T15:44:00.001-08:00

Today is my 52nd birthday. I awoke happy to be here still alive, alert, and able -- a personal mantra. I'm sure you understand it's significance.

As a special treat I went shopping and bought these silver hoop earrings set with tiny black diamonds. Naturally they were on sale!

This is a test

2011-11-14T14:52:00.000-08:00

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

2011-11-14T14:22:00.001-08:00

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.

Computer crash

2011-11-14T14:17:00.001-08:00

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.

Much better today

2011-11-10T17:18:00.001-08:00

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.

Neuropathy

2011-11-09T15:53:00.000-08:00

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.

One tough chick

2011-11-07T09:04:00.001-08:00

How a friend I've known since 1979 sees me.

Scan results

2011-11-02T16:35:00.000-07:00

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!

Last day of Pinktober

2011-10-31T14:41:00.000-07:00

I read on Facebook about a woman who uses the last day of October to remember those she's lost to breast cancer. I thought this was a beautiful custom to share.

I remember....

My grandmother, Mary Neuer Cohen, who also had metastatic breast cancer and lymphedema. In the late '60s and early '70s, no one knew how to control lymphedema. She suffered with an arm the size of her leg. My first cousin became an oncologist because of Mema's cancer.

(My other grandmother, Esther Aaronson Poppel, lived for a long time with breast cancer and as far as I know it was not responsible for her death at a ripe age.)

Emily, my dear young friend. We met on an airplane going to a conference on the other coast and talked for the entire time there and back again. We could talk for hours, despite the differences in our ages and backgrounds. She only wanted to live to turn thirty and died soon after her 30th birthday, leaving a husband and two young children.

Dena, who underwent a simple surgical procedure and entered a coma from which she never woke. Dena used to say that with neuropathy, she could wear the fancy shoes. Her feet were so numb from neuropathy that she couldn't feel how uncomfortable the shoes were! Her husband didn't know her wishes regarding hospice care because they hadn't figured out how to talk about it. She left a young child.

The "other" Jill, who I met by accident when I heard her say her name. I was near her house a few months ago and recognized it, almost by accident, as the seeting of our many talks. She left a husband and young child.

Wynne, who I met at a young survivors retreat in Las Vegas. She looked me up on a trip to Seattle and from that point on we became friends. Wynne and her husband had just adopted an infant daughter when her cancer took a turn for the worse. She died before her daughter's first birthday.

And although they didn't have breast cancer, I remember...

Josh, the bravest person I knew, who lost his left hand after a growing sarcoma forced amputation and who with his wife raised three children, worked in his field, volunteered, wrote poetry, and made a movie about his struggles with cancer (My Left Hand). He was a mystic and spiritual person who brought the spark of the divine closer to all.

My beloved friend from high school, Rabbi Charisse Kranes. Although she died from cervical cancer and not breast cancer, she figured hugely in my developing years and helped make me the person I am today.

My father, who suffered from non-Hodgkins lymphoma and whose treatment may have helped him decline from robust man to bed-bound. Still talkative in his last days, he told me he wasn't going to die, even when his quality of life was very poor. On our final visit we reminisced with my mother about childhood days with my sister. Now, as my mom says, there's no one left who remembers when they were all young together.

Zichrono l'vracha, may their memories be for a blessing to all who knew them.

Today's update

2011-10-31T14:09:00.000-07:00

In preparation for today's PET/CT scan, I had to eat a special diet for the previous 24 hours. No carbohydrates at all; high fat and protein. That meant no milk in coffee; hardly any vegetables; no fruit at all.

For breakfast I made a two egg omelet, sauteed in butter, filled with sauteed mushrooms and some cheese and a cup of herbal tea. (Missed my morning mocha ALOT!) At lunch I polished off the rest of the leftover chicken from a couple of days ago. I snacked on a handful of almonds. At dinner, green salad, freshly picked from our garden, and broiled lamb chops. I drank a lot of water too. What did I miss? No bread, potatoes, CHOCOLATE. That last was the hardest to give up, even for a day.

Then I fasted for 12 hours before the scan. I managed to drink all of the glucose solution without too much gastro-intestinal trouble. After the scan, I met some friends for brunch where I devoured a buckwheat pancake topped with strawberries, blueberries, raspberries, and freshly whipped cream and a huge mug of coffee. After I cam home I immediately ate a piece of chocolate, thereby getting my daily dose of vitamin CH. I guess I'll have to have two pieces today to make up for missing yesterday.

I get the scan results from Dr G on Wednesday, as well as my latest tumor markers (hopefully at normal for the first time in a long time). We'll see what comes next.

My Avastin-related bloody nose has subsided a bit and I no longer have mucus running down my face if I can't get to a tissue in time. I am really looking forward to this week off treatment and hope to recover full strength soon.

Now I plan to get some nap time on the sofa, since my evening will no doubt be disturbed by several trick or treaters. We don't really celebrate Halloween. I moved the carved Bob O'Lantern to the front steps and will light a candle in it to encourage some kids to come to the door. Maybe I'll see some neighbors and former neighbors. Teens, stay away. Halloween is for the little kids.

Better today

2011-10-28T15:02:00.000-07:00

My nose was slightly less bloody today (only used 15 tissues before noon). So far I've had coffee with a friend, ran two errands, and done three loads of laundry. Next up is to start some soup for dinner -- I'm considering squash/pear bisque -- and maybe bake an apple galette for dessert. I must feel better.

We have no guests for Shabbat dinner tonight, since I may have to pick up the car from the auto repair shop and didn't know what time it would be ready. Still, I like to make a good dinner at least once in the week and hot soup sounds very appealing on this cool, rainy day.

My toes, however, are warmly ensconced in my Uggs. It turns out that cold negatively impacts neuropathy. I have been trying to keep my tootsies warm at home and while out without over-wearing any one pair of shoes. Today the Uggs won the toss of what to wear.

More Ladarke

2011-10-26T17:57:00.000-07:00

I LOVE to sing!

Checking In

2011-10-26T17:54:00.000-07:00

It's been a tough couple of days, more so than usual.

Monday's chemo took 5.5 hours for a 90 minute infusion. This time Dr G got everything approved and properly "signed" on time, but the Swedish Cancer Institute lab had a machine breakdown and couldn't process my creatinine. They had to send the sample over to the hospital lab and of course that took MUCH longer than usual. I did have company with two friends and went out to lunch afterwards with one of them. Then I came home and crashed hard on the sofa for an hour or so. I am thankful to have next week off treatment.

Tuesday was a continuation of the recent busy days. I woke up early again and then waited most of the morning for an insurance adjuster who didn't have the right appointment time. Next I went to my weekly meeting with the rabbi and synagogue executive director. Then it was off to the podiatrist to get my toe checked out.

Yes, I have another doctor. I thought this was an infection from earlier in the summer, but Dr Lo says it was a toenail curving into the nail bed. I also had him look at my other big toe and he confirmed a fungal infection. So he trimmed back both nails )one more dramatically than the other) and I am to apply an over-the-counter anti-fungal ointment every night until the nail regrows. Maybe this will prevent the fungus from returning, but with my compromised immune system, it's doubtful.

My feet are still painful from the peripheral neuropathy but I also noticed numbness for the first time. Dr Lo the podiatrist says this could be addressed through additional gabapentin or maybe a new medication called Lyrica. I think I tried this last year, because I still have a bottle of it on hand. I will ask Dr G when I see him next week.

Today was spent in front of the computer on a synagogue project, finally going to the grocery store and blowing my nose over and over again. I had a major case of the Avastin bloody and runny nose. I again crashed hard of the sofa and slept for more than an hour with Bobka the dog nestled at my side. Hard to imagine who was happier about it -- him or me.

I have a PET scan on Monday and hope for good results. Either way I plan to tell Dr G about the dramatically increased neuropathy and to ask him to consider a treatment break. It's tough to balance controlling my cancer with keeping a good quality of life, but he is usually receptive to my concerns. And if I can't walk properly, it's hard to have a good QOL.

Ladarke!

2011-10-24T19:01:00.001-07:00

Yet another reason to stop giving to Komen

2011-10-24T18:10:00.000-07:00

I've asked many questions about Komen's financials over the years. Read here for author Gayle Sulik's (Pink Ribbon Blues) summary of the research The Cancer Culture Chronicles did into Komen's publicly available financial statements.

Susan G. Komen for the Cure is the largest and most visible breast cancer nonprofit. Therefore, tracking its public relations campaigns, breast cancer programs, revenues and expenditures are important for understanding one aspect of the breast cancer industry. While I’ve done my share of number crunching for statistical research, I rely on ....

Thanks, Chemobabe, for your tip on this important story.

Ladarke at Croatia Fest

2011-10-21T14:30:00.000-07:00

Seattleites can hear my choir Dunava, along with Vela Luka Croatian Dance Ensemble, Dave and the Dalmatians, and other special guests, in a FREE special performance of Ladarke, a Croatian choral piece composed by Emil Cossetto.

Croatia Fest

Sunday, October 23

3:55 PM

Seattle Center Exhibition Hall

Click here to view a YouTube video of the last time this production was mounted in 1994.

Bobka update

2011-10-20T20:48:00.000-07:00

Bob the dog is recovering nicely from his dental cleaning and surgery. This evening he "graduated" from canned food to dry kibble soaked in warm water, which he ate so rapidly I don't think any bits touched his teeth.

The x-ray report wasn't as good. Evidently he has compression of several spinal discs. The vet recommends we keep Bob very quiet for the next two to four weeks, to ease any pressure on his spine. That means no walks at all, just going into the backyard to pee and poop. Bob could go for years like this and not need surgery. But we're also supposed to watch for pain, incontinence and/or difficulty moving, which would be indicators of a much more serious condition than the vet currently thinks is the case. The vet was happy to hear that a few months ago we started using a harness instead of attaching Bob's leash to his collar.

The dental/surgical follow up will be in two weeks as well. Maybe by then the vet will allow us to go on short walks. In the meantime Bob seems happy to snuggle on the sofa and has no trouble jumping up, as I realized when I saw a Bob-shaped arrangement of a previously carefully folded blanket.

A long couple of days

2011-10-18T11:27:00.000-07:00

What a long day yesterday was!

First I dropped off Bob the dog at the vet for a dental cleaning and x-ray to check out his hoip. He'd been complaining while scratching and grooming himself so we were following up. The dental thing is annual.

Then I was at the Swedish Cancer Institute for four and a half hours for my 60 minute infusion. The lab was very busy and I waited there for almost an hour. Then G came and we hung out in the waiting room for an other hour. By 11 AM or so I was in a chemo chair hoping for a quick infusion and off we would go! but no. Dr G's computer orders still don't sync with what I know he wants (i.e., this is day 8 and I get Abraxane only, no Avastin). More talk on the phone while G and I wait, and wait, and wait. Finally all is confirmed and I started the Abraxane just after noon, was done just after 1 PM. Then I had to make some follow up appointments, so it was about 1:45 before we sat down to eat lunch.

The sun was shining and I still felt good, so after lunch I went to the grocery store to pick up a few things. By the time I got home and unloaded the bags, my energy had started to flag. Of course by then I had to find out about the dog before I could take a nap.

It turns out Bobka needed 16 teeth extracted! It was supposed to be a routine dental cleaning with two suspicious teeth, but in the course of the cleaning, they found periodontal disease and loose teeth. Most of the ones pulled were the front upper and lower tiny incisors, the side incisors I had discussed with the vet, and three back molars.

Needless to say I was more than surprised to hear this news. The tech also told me that BOb had to stay overnight at the vet (at no charge, thankfully, but still...) because he hadn't come through the anesthesia well. That scared me.

I tried to lie down for a bit until RIk came home because I wasn't sure I was processing all this dog-related information very well. Together we called and spoke directly with the vet, who assured us that all the extractions were medically necessary. He also said that Bob needed to stay overnight because he needed intravenous pain management. He'd come through the anesthesia fine! After that reassurance I was able to sleep, which I did, from 5 PM until 7 AM this morning.

Today I went off to Swedish for my Neulasta shot to boost my white blood cell count. Then I went straight to the vet, where Bob greeted me with enthusiasm. We came home, he roamed our yard contentedly and is now happily cuddled up in his dog bed.

And it's only 11 AM. I wish I could crash again, but I have a noon meeting now and a dinner meeting tonight. We will see how well I do as the day progresses. At least the sun is still shining!

A new addition to our sukkah

2011-10-15T19:29:00.001-07:00

It's a Bob O'Lantern, hand-carved by our friend D, the proud owner of two Cavalier King Charles spaniels.

Walking the 3 Day

2011-10-15T19:27:00.000-07:00

My sister has conquered day two of the Komen 3 Day in Philadelphia:

Sister S (on the right) and her walking buddy.

LOL

2011-10-14T17:16:00.000-07:00

While talking with my sister yesterday, she told me a laugh-out-loud story. It seems one of her Facebook friends also had a family tradition of making onion cookies. This friend had lost their family's recipe and put out a call to her relatives -- who had Grandma's recipe? A niece replied that she had it. When my sister, curious about this other onion cookie recipe, asked to see it, it was the exactly the same as our family recipe. How could this be?

Turns out the niece had found the recipe online. From MY BLOG!

If you too want to try the Cohen family recipe for onion cookies, look here.

Go Sis!

2011-10-14T17:10:00.000-07:00

This weekend my sister participates in the Susan G. Komen 3-Day for the Cure® in Philadelphia. Participants must raise a minimum of $2300 and train to increase their stamina and ability to walk 20 miles each day.

I am proud that S raised $6500 for Komen. When we spoke yesterday, she was planning to spend the evening with her walking buddy, decorating their backpacks with the names of those they are honoring and remembering in their walk. In our family, this includes both our grandmothers (as well as me, of course). S also plans to recognize her friends and colleagues who have had breast cancer.

Here's what S wrote on her donation page:

With your help, I can make a difference

For over 12 years I have watched my sister, Jill Cohen, live with
metastatic breast cancer. Her journey has been inspiring. Many of us
have watched loved ones struggle with breast cancer, survive breast
cancer, and too many have lost their lives to breast cancer. The Susan
G. Komen 3-Day for the Cure is something I can do now, and with hope,
prayer and together with your financial support we can make a
difference in the lives of many.

The Susan G. Komen 3-Day for the Cure™ is a 60-mile walk over the
course of three days. Net proceeds from the Susan G. Komen 3-Day for
the Cure™ are invested in breast cancer research and community
programs. The Philadelphia 3-day is October 14-16, 2011.
Jill has benefited since the early years of her diagnosis from the
Susan G. Komen Foundation. She has attended many conferences for young
women with breast cancer, support groups, and programs with scholarship
from Komen.

I am walking the 3-Day with my dear friend Erica King. We have been
training since April, with a small "break" to heal my broken ankle.
Since we need to get to 20 mile increments, you may see us all over
Cherry Hill, logging the training miles! And yes, we proudly wear
pink.

You can read more about Jill's story on her blog, Dancing with Cancer

My thanks and gratitude for your support.

I am sure my sister will have a great time and achieve her goal of walking all 60 miles, just as her fundraising more than tripled the minimum required. You go, sis!

(FYI, Charity Navigator rates Komen with four stars (Exceptional: Exceeds industry standards and outperforms most charities in its Cause.). Although I personally feel Komen should give more money to research and less to awareness (who in the USA isn't aware of breast cancer??), page 13 of their 2009-2010 annual report says they spend 7% on treatment, 24% on research, 15% on screening and 34% on education.)

Back to the old template

2011-10-14T16:35:00.000-07:00

I received some feedback about the new "dynamic" template, and decided to revert to the old format.

Writing Chick said it best:

Hm... seems snazzy, but I don't like it.

For one, all information about you is gone. There used to be a sidebar with links and information about you... no more? I tried several views, and it doesn't appear in any of them.

Your tag line, which starts with "I got breast cancer in 1999...", is cut off, and only visible if you hover the mouse over it -- but then it appears with HTML tags visible, which isn't pretty.

The variance of views (Magazine, Flipcard, etc.) seem fun, but it looks like everything else besides the blog entries themselves got cut or altered. Wouldn't be surprised if Blogger switches it back.

So we are back to basics for the time being. I think Blogger will eventually create all the widgets for the side bars etc. in the Dynamic Views. We will see!

Metastatic Breast Cancer Awareness Day 2011

2011-10-13T17:59:00.000-07:00

Today, October 13, is Metastatic Breast Cancer Awareness Day. I received this email from Living Beyond Breast Cancer this morning. You can help raise money specifically for metastatic breast cancer.

For Metastatic Breast Cancer Awareness Day 2011, Genentech has partnered with Living Beyond Breast Cancer, MetaVivor and Metastatic Breast Cancer Network to help support people living with MBC — this time with a focus on how friends and family can help.

Today, they are launching a new video that provides a look at how the disease is different from early breast cancer. The video reflects the sentiments of an online survey of 760 people with MBC and provides us with simple ideas on how friends and family can help these women with their journey. For every video view, Genentech will donate $1 to MBC initiatives and programs (up to $20,000).
Please help us “spread the word” in these three easy steps:

1. Facebook:

a. Replace your profile picture today with the Metastatic Breast Cancer Awareness Day image on your right. b. Post a “status update” about “Faces of MBC” that links directly to the video:
Example: Today is Metastatic Breast Cancer Awareness Day. For each view of Faces of MBC video, $1 will be donated to MBC initiatives (up to $20K). Watch today – www.facesofmbc.org.

2. Twitter:

a. Follow @facesofmbc and re-tweet messages about #FacesofMBC

Example: New video gives a voice to people with metastatic #breastcancer. Check out www.facesofmbc.org to spread awareness and raise $1.

E-mail: Send a link to the video – www.facesofmbc.org to your friends and family via e-mail

Quick update

2011-10-12T18:13:00.000-07:00

Monday's chemo went even slower than usual. I arrived at 11 AM but the lab was backed up, so they didn't take me until 11:30 AM. I waited more than 90 minutes for lab results and a go ahead from Dr G to treat me. Thanks to my good friends G and R I had company almost the whole time, but still! 4+ hours for a 90 minute infusion? I just can't get over it and yet it happens time after time.

I was so drained by the time I arrived home at about 5 PM that I got into bed and stayed there until this morning. (Rik ordered himself a pizza and looked after Bob the dog.)

Our sukkah - note the grape lights

I felt much better when I got up but was tired after the morning dog walk and a few errands. I waited at home for the delivery of the new Blomberg washer and dryer. The installation finished by 4 PM and I have been catching up on email, doing some cooking for the Sukkot holiday beginning tonight. We're having chicken with prunes, capers and olives plus quinoa. Tomorrow's menu will feature pear-squash soup. I'm lucky that I can eat well while on chemo.

Happy Sukkot to one and all!

Trying something new

2011-10-10T23:35:00.000-07:00

Blogger has created new Dynamic templates. What do you think of this version, called Magazine? It's a different way to showcase my blog. Just click on a post to read the whole thing. I'd like your feedback.

May her memory be for a blessing

2011-10-10T23:28:00.000-07:00

We drove to Vancouver BC today for the funeral of Rik's "aunt." The two families were so close when they all lived in Montreal. The kids called all the parents aunt and uncle and they refer to one another to this day as cousins.

Auntie E was devoted to her family. She found tremendous opportunity for self-expression in caring for her husband, children and grandchildren. She died suddenly last week while visiting her daughter's family and due to the impending Yom Kippur holiday, the funeral was delayed until today. Normally Jews bury our dead within 24 or 48 hours, a custom which doubtless harkens back to our ancient desert days.

Rik's cousin, the rabbi who married us, gave a moving eulogy about his mother. His voice cracked with emotion as he reminisced about the close connections between the two families. The burial immediately followed the funeral service, and as is the custom, everyone present helped. We throw shovels full of dirt into the grave, using the back of the shovel at first to show our reluctance. It's the last act we can do for another human being, which they can never repay. The thump of dirt on the coffin is the most final sound you can imagine and truly brings home a sense of loss.

We then formed two columns and the mourners walked between them to the cemetery's exit as we offered the traditional words: May God comfort you among all the mourners of Zion and Jerusalem. Last we washed our hands, symbolically purifying ourselves.

After the funeral and burial we returned to Uncle S's home for the meal of consolation. We Jews also believe that it's important to show immediately that life does continue for the mourners. We ate round foods: hard-boiled eggs, lentils and chickpeas, which symbolize the circle of life. As we talked with one another about Auntie E, I noted that G had torn the kriah on his tie. I learned the Montreal custom is for men to tear their neckties and for women to tear a scarf which they wear around their necks.

Rik and I stayed as long as we could, then drove home to Seattle. On the drive he told me more stories about their growing up together. The whole day was a chance for me to become even closer to Rik and his family.

Zichrona l'vracha - may her memory be for a blessing to all who knew her.

(If you want more information about Jewish mourning customs, I find that this site is particularly informative.)

Onion cookies

2011-10-07T14:31:00.000-07:00

Last night my sister called with the annual reminder that it's time to bake the onion cookies. This family recipe was handed from my grandmother Mary Neuer Cohen to my father, and from him to my sister and I. It's our special way to break the fast after Yom Kippur. You can find the recipe here. I baked a half-batch because we only have 12 people coming over to break the fast, and a full batch yields 40+ cookies.

There is nothing quite like an onion cookie fresh from the oven and slathered with butter or cream cheese. Think of it as a savory Jewish biscuit, complete with chopped onions, black pepper and poppy seeds.

(I almost forgot to add the onions; they were on a cutting board on the other side of the sink and not in my direct line of sight. I had to put all the cut cookies back into the bowl and knead the onions into the dough. Fortunately they still came out fine!)

I bake them a day ahead to serve after the fast. The cookies can get soft after a day in a baking tin, even with a piece of bread placed in the tin to take up the moisture form the onions. I have figured out how to improve upon the piece of bread in the tin. You heat the cookies briefly on a baking sheet in a low oven to restore crispness. Still delicious!

I also baked four loaves of crown challah to bring to the pre-fast meal this afternoon and a chocolate-zucchini cake for the break-the-fast tomorrow night. I'm on a baking roll! (Pardon the unintentional pun.)

Wishing all gmar hatima tova, a good conclusion to the days of awe. We should all be written and sealed in the book of life for the next year.

Missing them

2011-10-06T19:28:00.000-07:00

I have spent the past few days practicing yizkor, the memorial service for Yom Kippur. Yesterday I had the bright idea to find the CD my friend T made of an old tape recording. My dearest friend from high school, Charisse Kranes, became a rabbi. Only a few months after her ordination, she was diagnosed with cervical cancer. She attributed the hard lump she felt in her belly, plus the various tummy aches and pains, to nerves as she approached ordination. Instead she had a tumor the size of a grapefruit.

After surgery and while she was undergoing chemo, Charisse got married. A year or so later, when she and her husband had moved to the Bay area, I asked her to record some high holiday music for me. This became the "love note," as she called it, which my friend T had transferred to CD for me a few years ago. Charisse died in 1989 at the age of 32.

Imagine my surprise when I didn't recognize Charisse's voice on the CD. Who was that talking and singing? Only after a few moments had passed did I realize that I was listening to Charisse, z"l. I spent the next while labeling all the digital tracks and uploading them to iTunes. I didn't find the particular tune I'd hoped she'd recorded, but that brief trip down memory lane made me realize how much I missed Charisse.

Preparing for yizkor also makes me think of my father, Sheldon Charles Cohen. He did in 2008 at almost 80 years old. How I wish that my husband had had the chance to know my dad when he was younger, less bitter and more happy. Dad survived a stroke at age 62 and spent his last few years with non-Hodgkins lymphoma. He gradually let go his hold on life. On my last visit, when I was deputized by my mother and sister to find out Dad's wishes regarding a funeral etc., he was still filled with hope. I had the hard talk with him, and he asked why I was crying. He said he wasn't planning to die. This, while he was practically immobile in a nursing home bed. Somehow, we never do want to let go of life, even when we are dying.

The death of Apple co-founder Steve Jobs is all over the news today. I heard a recording of him giving the 2005 commencement speech at Stanford University. Here is the part that struck me in the heart:

No one wants to die. Even people who want to go to heaven don't want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life's change agent. It clears out the old to make way for the new.

So I practice my yizkor tunes, think of my departed family and friends, and hope that I will do justice to what they taught me this coming Yom Kippur. Zichrono l'vracha, may the memories of our loved ones be for a blessing to all who knew them.

Appliance rant - don't buy Whirlpool!

2011-10-04T16:43:00.000-07:00

We own four Whirlpool appliances: a dishwasher, refrigerator, washer and dryer. The washer began having issues just after the warranty period ended. Recently more issues arose with this three year old washer. The white cycle stopped working. The normal cycle stopped working. And then it died on every cycle. Turns out the electronic circuit board has failed. Repairs were estimated at more than $400, almost the price of a new washer. So I thought I'd call Whirlpool and see if their customer service department is really service-oriented.

After waiting on hold for more than ten minutes, the customer services representative assured me there was nothing she could do since the washer is past the limited one year warranty period. I asked to speak with a manager, waited on hold for another ten minutes, and was told the same thing: the machine is no longer within the warranty period, so Whirlpool can't (read won't) help.

Moral of the story: NEVER BUY WHIRLPOOL AGAIN. And tell everyone you know not to buy Whirlpool products.

Pinkwashing

2011-10-03T19:05:00.000-07:00

Check out this YouTube video about pinkwashing.

Take action at www.thinkbeforeyoupink.org.
Pinkwashing has reached a new low this year with "Promise Me," a perfume commissioned by the giant of the breast cancer movement, Susan G. Komen for the Cure. Promise Me contains chemicals not listed in the ingredients that: (a) are regulated as toxic and hazardous, (b) have not been adequately evaluated for human safety, and (c) have demonstrated negative health effects.

Think Before You Pink defines Pinkwasher: (pink’-wah-sher) noun. A company or organization that claims to care about breast cancer by promoting a pink ribbon product, but at the same time produces, manufactures and/or sells products that are linked to the disease.

So PLEASE don't buy the pink ribbon products. If you really want to support this cause and find a cure, make a donation to a charity that puts their money to good effect:

METAvivor (funding research exclusively into metastatic breast cancer)

The Breast Cancer Research Foundation (the name says it all)

A happy new year to all

2011-10-02T19:55:00.000-07:00

Rosh Hashanah was terrific but it's been a long few days. We celebrated the beginning of the holiday at dinner Wednesday night with the usual gang of friends (family of the heart, I call it). On Thursday, after a long morning of praying, we had a long afternoon of eating and socializing with more friends, some family of the heart and others we have shared this holiday with for as long as I can remember.

The ancient Jewish custom of tashlich involves casting our sins into the water symbolically using a piece of bread. We always do this with friends at Alki Beach. This year I noticed a group of very Orthodox men in black suits, white shirts and hats. We moved a little further along the beach and read a few words from the prayerbook, sang a few songs with water themes, and did a little private meditation.

On Friday I went to synagogue while Rik taught school. After more praying, I enjoyed yet another large meal with synagogue friends and headed home to prepare for Shabbat dinner.

Do you detect a praying and eating theme here? I often tell a joke about what's behind so many Jewish holidays: They tried to kill us. God saved us. Let's eat.

Saturday was Shabbat Shuva, the Sabbath between Rosh Hashanah and Yom Kippur commonly known as the Sabbath of Returning. There are some special additions to the prayer service on this day, and I've been leading a particular service for many years and did so again. Because the new year holiday fell on Thursday and Friday, there were fewer people than usual in synagogue by Saturday. Three days in a row is more than many (most?) Jews can handle.

By Saturday afternoon I was pooped beyond belief. I crashed hard on the sofa and slept for a few hours, ate a light meal of leftovers and watched a DVD.

This morning I felt enough better to make french toast from the remaining challah, go to the grocery store, and have a long visit with some close girlfriends. We went out for dinner (Greek avgolemono soup at The Continental Restaurant and Pastry Shop). Now I am in my jammies, ready to put my feet up.

I am pretty tired after all these new year's activities, but I am extraordinarily happy to have had the energy to celebrate as much as I did. I think this bodes well for the new year!

Rosh Hashanah wishes

2011-09-28T13:29:00.000-07:00

We say something like this in my weekly yoga class:

May all beings be free from suffering.

May we all be healed in heart and mind.

May all beings live in peace and harmony.

May we have joy and happiness in abundance.

שנה טובה ומתוקה

Shana tova umetuka

Wishing you and yours a good and sweet new year

How to help

2011-09-28T11:53:00.000-07:00

Yesterday a new follower named Janelle commented that her mother had recently been diagnosed with metastatic breast cancer and she didn't know what to do to help her mom. Since Janelle posted a common question, here is my take on how to help someone you love when they've been given a diagnosis of advanced cancer.

Janelle, I am so sorry to read that your mom has advanced breast cancer. I imagine that everyone in your family is upset about this diagnosis. No doubt all of you are reacting in different ways.

Every person diagnosed with cancer has to find her own path on this journey. And those who care about them have to somehow allow themselves to let their loved one find their own way.

It's been my experience that no one can walk the cancer road with me unless they themselves have been diagnosed with cancer or another major illness. No one else really understands how I live with facing my own mortality on a daily basis. No one else grasps just how badly the treatment side effects can make me feel. And no one else can plumb the depths of my despair at my body's betrayal of me.

That said, there are things you can do to support your mother. If you live in the same town, you can driver her to appointments and bring her meals. You can visit, spending time just being with your mother. Or on a good day, you can take her out for a break from cancer to see a movie, go to a restaurant, or do something together that you know brings her joy.

You have to deal with your own issues too, whether that means talking with a good friend or family member, finding a support group for caregivers, or seeking counseling from a trained professional.

As a cancer patient, your mother has many resources available to her. I attend a support group that meets weekly at the hospital where I receive treatment. Although not everyone in this group has metastatic breast cancer, everyone has a diagnosis of advanced cancer and we help one another.

There is a Gilda's Club in Seattle and I've been a regular at Friday yoga classes for many years now. Gilda's Clubs also offer many other classes and workshops and are found in many large US cities. In Seattle we also have Cancer Lifeline, which provides a similar program.

I also belong to Club-Mets-BC, a listserv for women with metastatic breast cancer and their caregivers. You can find us at http://www.acor.org; click on Mailing Lists at the top of the page, then browse alphabetically under "C" or look for us under Most Common Cancers or Women's Cancers. Ours is a closed, or private list, meaning you have to apply to join us. There is also BC Mets, which is an open list, meaning anyone in the world can read any posts at any time.

Your family and friends may want to donate their money or time to breast cancer causes. I am partial to METAvivor, which funds research exclusively into metastatic breast cancer, and the Breast Cancer Research Foundation. I don't particularly think Susan G Komen For The Cure does much for women with metastatic breast cancer, but they are the largest such charity in this arena. I stay away from all the pink ribbon marketing (check out Think Before You Pink).

Your mother is on a tough road. It took me months to come to grips with my re-diagnosis at stage IV when I was 42 years old. The thing that helped most was writing an ethical will. In this ancient Jewish practice I found insight into the values I cherished the most at a time when I thought I would die within a year. You don't have to be Jewish to write one.

And lastly, we say in our home that sometimes we take it one day at a time; sometimes one hour at a time; sometimes one minute at a time. When it's one minute at a time, that's when I eat a piece of dark chocolate (vitamin CH!), because I know that at least this one minute will be a good minute. It's a bit flippant and doesn't help too much when things are really bad. But I like chocolate, and if iI can concentrate on something other than cancer for one minute, that takes my mind off cancer for one minute.

I hope this helps.

Latest chemo dose

2011-09-27T18:34:00.000-07:00

Yesterday I received dose 13 of Abraxane (and some Avastin, but I'm not counting the number of times I've had that drug). All went well, except that Swedish just upgraded the computer system and Dr G and his staff were not ready for it. As Minor and James gets more integrated into the Swedish system, I am sure things will improve. But in the meantime Dr G had a hard time implementing his orders digitally. And he may have been at the Swedish doctors' meeting from 8 - 9 AM when they all got a lesson in the new upgraded system.

So my early 8 AM arrival didn't matter, since Dr G wasn't in his office until after 9:00. I sat in the waiting room from 8:00 until 11:00, reading, doing the crossword puzzle, and chatting with a friend. Luckily, by the time they took me back to the infusion center, my drugs had arrived from the pharmacy and we got started right away. I was finished just after noon, making this the longest chemo day yet at four hours.

I have had a small sore on my tongue for a few days. It was annoying but not really painful. The infection is my toe from a manicure in mid-August has still been bothering me, so Dr G put me on an antibiotic, and I think that has helped the mouth sore as well. It's not bugging me at all and is practically gone.

And for those who recall, I took a mammoth nap the other day, but awoke after only an hour feeling refreshed and ready to go grocery shopping.

Today I started the cooking for the Rosh Hashanah meals we will be sharing with friends. I made zwetschkenkuchen, a cookie-like pastry baked with Italian prune plums. I didn't quite have enough plums for the quantity of pastry, so added some late raspberries and chester berries from our garden. It looks great and smells even better. Thanks H for the recipe! I also made some baked gefilte fish using D's recipe. Tomorrow I will bake the travados.....yum, travados! Many, many thanks to B who shared her family recipe with me several years ago. Although I am not Sephardic, I make these little nut-filled, lemon and honey simmered pastries every new Jewish year.

Tired

2011-09-25T10:48:00.000-07:00

Tomorrow I am supposed to get dose 13 of Abraxane. I've had slightly fewer doses of Avastin. There is one sore on my tongue and I am feeling pretty pooped today. I'm going to take a nap even though I just finished eating breakfast and walking the dog.

It's cooled off again in Seattle although the sun is trying to break through the clouds. My experiment of leaving my head uncovered has been successful although I'm not sure what I'll do in this cooler weather! I guess wear a hat instead of a scarf and try to look more like a normal person.

I'm putting dark brown eye shadow on the two noticeable patches of less hair growth on my head. But even with head hair growth, my eyelashes are mostly gone.

That's all, I'll stop rambling now and take that nap.

Mazal tov, Hadassah!

2011-09-21T22:34:00.000-07:00

I was asked to say hamotzi, the blessing before one eats, at tonight's Breast Cancer Exposed! gala benefiting Hadassah Medical Organization's breast care center in Jerusalem. I was touched and honored that the committee chairs, who know me only slightly, would offer me this opportunity to speak a few words to 300 of Seattle's leading Jewish and non-Jewish philanthropists.

I chose not to cover my head for this moment. This is not a shallow issue for me. I wanted to make the point that my breast cancer hadn't gone away.

I'd wavered back and forth for a week about whether to wear my wig (no, with it on I look sort of normal); a hat (not good for public speaking, people can't see your face under the brim); a scarf or simply au naturel. In the end, given some slight hair growth despite the chemo, I chose not to wear anything. I tried being in public uncovered for a few days and got no odd looks or unpleasant comments, even from strangers. That helped me decide I had just enough scalp coverage to make an unspoken statement that there was at least one woman in the audience currently in treatment for, and living with, advanced breast cancer. I hope doing so made a powerful point and that I didn't look simply unfinished.

Here is what I said:

Erev tov – good evening all! My name is Jill Cohen and I am proud to be a Life member of Hadassah since 1999. (This generated a round of applause.)

Next week starts the Jewish new year, Rosh Hashanah. It’s a chance to begin a fresh start, to put the past behind us and look to the future.

There are many other “new years” in our lives: We celebrate birthdays. Children and teachers recently started a new school year. January 1st marks the secular new year. Tu b’Shvat is the Jewish new year for trees.

And I celebrate a very personal kind of new year. Every August 20th is the anniversary of the day I was diagnosed with stage IV, advanced, metastatic breast cancer.

Tonight we’ll hear about the impact of breast cancer, and how Hadassah helps. As a woman living with breast cancer since the age of 39, I can tell you that cancer taught me how to live a “new normal.” Every new year that I live with advanced cancer is another year of possible new treatments, new drugs, new hope for longer survival. Research from Hadassah in Israel will help women like me in the USA.

In this week’s Torah portion, Nitzavim ( (Deuteronomy 30:19), we read: “I have set before you life and death, the blessing and the curse; therefore choose life.”

How can you choose life in the coming new year? Celebrate this new year by prioritizing your health. See your doctor, your dentist, your eye doctor. Schedule that colonoscopy! (Laughter from the audience) Women, get your mammogram.

A fresh new year brings the opportunity to start new things, create new habits, and follow new directions. This year, be zealous about your own health. This new year, celebrate yourself by making you the priority.

L’shanah tova tikateivu v’teichateimu

May you be inscribed and sealed for a good new year.

I owe a debt to Kathy-Ellen Kups, whose words inspired me to explore the connection between living with breast cancer and starting a new year.

Tired today

2011-09-21T13:14:00.000-07:00

I had my second dose (in this round) of Abraxane on Monday. Last week I was really tired on Tuesday, but did all my planned activities and so was out from 10 AM - 2 PM, too long and without lunch. Today I knew I needed to save energy to attend a function tonight but I was so tired I wanted to take a nap after breakfast. Instead I ran a couple of errands and only now am I heading towards the sofa to sleep.

I had a shot of Neulasta on Tuesday so my white blood cell count should be climbing. I don't know if I am anemic or not. I forgot to get a printout of my lab work from Monday.

Hopefully a nap will do the trick.

Harvest

2011-09-18T15:21:00.000-07:00

The Seattle rains started last night. It's been cool for days now, summer is definitely over in the Pacific Northwest even though the calendar says we are supposed to still have a few more days left. Here is my (probably) final garden harvest haul:

The last of the blackberries

A few more cherry tomatoes

Some fall-bearing raspberries

More than 20 mostly ripe tomatoes and two peppers
(plus there were a few more we've already eaten)

The pinkification of October arrives early this year

2011-09-15T17:15:00.000-07:00

It feels too early for my annual rant against cause marketing and the "pinkification" of October, also known as Breast Cancer Awareness month.

First of all: Who in western culture isn't aware of breast cancer?

Second: How will licking yogurt lids * help people like me?

* "Yoplait will donate $.10 to Susan G. Komen for the Cure® for each pink lid redeemed by December 31, 2011, up to $2 million. Only 25 codes per user email address per day may be entered online. Restrictions apply."

Whoopee. Why can't Yoplait just donate the money? And there are many other charities besides Komen that fund research in to the treatment of and cure for breast cancer.

So this year, when you see all the tempting pink ribbon crap on the market place, think before you pink. Ask the hard questions:

1. How much money from your purchase actually goes toward breast cancer? Is the amount clearly stated on the package?

2. What is the maximum amount that will be donated?

3. How are the funds being raised?

4. To what breast cancer organization does the money go, and what types of programs does it support?

5. What is the company doing to assure that its products are not actually contributing to the breast cancer epidemic?
Don't buy into the pink. Make your dollar really count through a donation. Here are two of my favorite breast cancer charities, oriented towards research. After all, that's what I need.

Breast Cancer Research Foundation

METAvivor

Seattle Symphony Day of Music

2011-09-15T16:57:00.001-07:00

Dunava sings from 12 - 12:30 PM in the Illsley Ball Nordstrom Recital Hall!

The Seattle Symphony and Music Director Ludovic Morlot invite the public to experience live music at Benaroya Hall with a FREE Day of Music on Sunday, September 18, from 12 noon to 6 p.m. Over 40 musical acts representing a host of genres — from rock and hip hop to jazz, classical and folk — will appear on multiple stages. A full listing of performers and times follows below.

Day of Music is FREE and no tickets are required for entrance. Activities specifically designed for children begin at 10:30 a.m. in Soundbridge Seattle Symphony Music Discovery Center, on the corner of Union Street and Second Avenue.

New this year, a wine tasting — featuring live music and select wineries from Seattle Metropolitanmagazine’s September 2011 “Washington’s 100 Best Wines” list — will occur in the Norcliffe Founders Room from 12:30 to 3:30 p.m. Tasting tickets will be available at the door for $20; the wine tasting is the only part of Day of Music that requires a paid ticket.Special thanks to Boeing and the World Presidents’ Organization, Los Angeles Chapter, for sponsoring this incredible event.

Day of Music
September 18, 2011, beginning at 12 noon
(Children’s activities begin at 10:30 a.m. in Soundbridge)

Schedule of Performances by Location

S. Mark Taper Foundation Auditorium
12:00 p.m. Seattle Sounders FC Sound Wave Band
1:00 p.m. The Seattle Repertory Jazz Orchestra
2:00 p.m. Seattle Women’s Chorus / Captain Smartypants
3:00 p.m. School of Rock (aspiring youth rockers)
4:00 p.m. Seattle Symphony
5:15 p.m. Seattle Symphony

Samuel and Althea Stroum Grand Lobby
11:45 a.m Nancy Kirkner & Janet Anderson (solo English handbells & piano)
12:30 p.m. The Baudboys (A Capella)
1:30 p.m. Seattle Symphony Musicians (chamber music)
2:30 p.m. Bag o’Tricks (contradance)
3:30 p.m. Toy-Box Trio (New Classical Music with Carnival Flair)
4:45 p.m. T.E.A.M (hip hop)

The Boeing Company Gallery
12:00 p.m. Levi Waggoner, Heather Dye & Laura Milleson (vocals and piano)
12:45 p.m. Timothy Garland & Victoria Parker (violin duo)
1:30 p.m. Four to the Floor (jazz quartet)
2:15 p.m. Eric Haines (one man band)
3:00 p.m. The University of Washington Chamber Music Club (String Quartet)
3:45 p.m. Snake Suspenderz (cartoon jazz)
4:30 p.m. Lohan Prado (Beatles covers)

Illsley Ball Nordstrom Recital Hall
12:00 p.m. Dunava (Balkan women’s choir)
12:45 p.m. Seattle Classic Guitar Society
1:30 p.m. Q&A with Seattle Symphony Music Director Ludovic Morlot
2:15 p.m. Pacific MusicWorks (early music)
3:00 p.m. David Paul Mesler & Tony Rondolone with live painting by Leigh Knowles Metteer (chamber music)
3:45 p.m. Seattle Youth Symphony Orchestras (string quartet)
4:30 p.m. Rondalya Sa Seattle (Filipino music)
5:15 p.m. 5th Avenue Theatre

Garden of Remembrance
12:00 p.m. Celtic Arts: Puirt na Gael (Scottish Instrument Quartet)
12:45 p.m. Byron Au Yong & Friends (Kidnapping Water: Bottled Operas)
1:30 p.m. Youth Rescue Mission (indie rock)
2:15 p.m. Q&A with Seattle Symphony Music Director Ludovic Morlot
3:00 p.m. New Age Flamenco
3:45 p.m. UmojaFest P.E.A.C.E Center (hip-hop soul)
4:30 p.m. Juliana and PAVA (Ancient Russian Folk Songs)
5:15 p.m. Zero Gravity Circus (psychedelic jam rock band)

Soundbridge
10:30 a.m. Randal Thatcher (drum circle)
11:30 a.m. Anna Vasilevskaya (Russian folk for kids)
12:30 p.m Mary Kantor (Harundineus clarinet quartet)
1:30 p.m. David Paul Mesler (songwriting workshop)
2:30 p.m. Watershed Opera
3:30 p.m. Kids Céilidh (Irish sing along)

Norcliffe Founders Room (wine tasting / $20 fee per person)
12:30 p.m. Just ’Cause (jazz quintet)
1:30 p.m. Lohan Prado (Beatles covers)
2:30 p.m. Ars Longa (chamber music)

*All programs and artists subject to change.

Philosophy from the comics

2011-09-15T16:57:00.000-07:00

So true!

Hear Dunava sing!

2011-09-13T17:56:00.000-07:00

Here it Dunava's fall performance calendar!

Sunday, September 18, noon (yes, that's this Sunday):
We're part of the Seattle Symphony Day of Music, a grand showcase of all kinds of local groups, all genres. We sing from 12:00 - 12:30 PM in the Nordstrom Recital Hall at Benaroya Hall (200 University Street, Downtown Seattle). Admission is free! Click on the link for a full schedule.

Saturday, September 24, 7 PM:

This may be our smallest venue yet: We'll sing at the variety show "Muhabbet" at Cafe Paloma in Pioneer Square. This is a lovely intimate evening with delicious food and an eclectic variety of entertainment. The restaurant is small, so we recommend making reservations well in advance. Admission is basically the cost of your dinner. Cafe Paloma is located at 93 Yesler Way, Seattle, WA 98104-2530, telephone (206) 405-1920.

Sunday, October 23, 3:50 PM:

CroatiaFest at Seattle Center! We will perform the Ladarke song cycle with Vela Luka Croatian Dance Ensemble and Dave and the Dalmatians. Estimated time is 3:50 PM in the Exhibition Hall. Admission, again, is free! (Read here for more about Ladarke.)

And, finally, save the date:

Saturday, December 10, 7 PM:

Dunava in concert at MOHAI! I'll let you know when tickets are available, but I wanted to get this date on your calendar soonest. We'll sing songs from our CD, new Bulgarian songs we learned this year, and as always will have a special guest! (Not telling who!)

Thank you for your patronage, and we hope to see you in the audience soon!

The ladies of Dunava

(Christi, Dina, Hila, Jill, Jody, Meg, Meredith, Ramona, Tedy, and Val)

Chemo Monday

2011-09-12T18:10:00.000-07:00

After three weeks off treatment, today I started another round of Abraxane and Avastin. According to Dr G's plan, I will have several rounds of this chemo combo, until my tumor marker reaches normal (30). Right now it's at 85. Then I'll get a PET/CT scan. If all looks good, then two more rounds of treatment before I get a "vacation."

A round of this combo lasts four weeks and looks like this:
Day 1: Abraxane/Avastin
Day 8: Abraxane only
(Day 9: usually a Neulasta shot to boost white blood cell count)
Day 15: Abraxane/Avastin
Day 22: no treatment; recuperate and get ready to start it all over again the next week

Today I also received a monthly injection of Xgeva to strengthen my bones. This is the third such drug I've been on in the past nine years. For the first few years I had a four-hour monthly infusion of Aredia. Next was a one-hour infusion of Zometa. In comparison, the once monthly shot of Xgeva is a huge improvement, at least in terms of time!

Today's treatment went slowly but smoothly. I checked in at 8 AM and after a few minutes' wait, got my lab orders. I walked down to the lab, where I had a short wait until a nurse could access my port and draw blood. Then back upstairs, was called back quickly into a chemo chair but had to wait another 90 minutes until the lab came through with my test results and Dr G could approve my orders. Around 10:00 I finally started the treatment, which lasted until just past noon. Thankfully my good friend G was there to chat the whole time. I STILL cannot wrap my head around the fact that it takes four hours to get through this whole thing every week.

G and I had a delicious lunch at Cafe Presse. (G: zucchini soup with dill and green olive tapenade garnish and baguette. It smelled heavenly. Me: chicken liver pate with mustard, cornichons and dried cherries, butter lettuce salad with hazelnuts and vinaigrette, plus baguette. YUMMY.) I do prefer, on chemo days, to not limit my diet and I eat anything I want.

This lunch might have been a smidge too rich, because I experienced a bit of a queasy tummy while napping this afternoon. However, all was resolved with a bit of dry cracker. I never know if a queasy tummy is due to food intake or chemo but am always prepared at home with ginger ale, crackers, and of course, ondonsetron (anti-nausea medicine).

Because I'd woken up at 6:15 this morning in order to get to treatment on time, I took a marathon two hour nap this afternoon. I awoke slowly, ate that cracker, then fed and walked the dog. Poor Bob, he was short-changed on the walk front today.

Rik is at an evening meeting and after my enormous lunch, I don't feel hungry for dinner. I believe I will take it easy and watch another in the "Harry Potter" movie series. I'm slowly working my way through all seven movies and then will see the last one a second time.

Which would you prefer?

2011-09-11T15:54:00.000-07:00

I parked our all-electric Nissan Leaf next to a golf cart the other day. Which electric car would you rather drive?

Tomatoes!

2011-09-11T15:53:00.000-07:00

Today's garden haul includes the FIRST ripe slicing tomato, an Early Girl variety that has finally ripened on the vine in September. I hear Best Food's (Hellman's east of the Rocky Mountains) olive oil mayo, kosher beef fry and some lettuce calling my name....

And here are tomorrow's tomatoes, still getting red.

MBC survey

2011-09-10T19:24:00.000-07:00

I came across this survey of women living with metastatic breast cancer. If you are a reader who is living mets, you might want to complete it or spread the word to others.

Living Beyond Breast Cancer is partnering with Metastatic Breast Cancer Network, MetaVivor and Genentech as a follow-up to the 2010 Faces of MBC program.
If you are living with metastatic breast cancer (MBC), we encourage you to share your voice via a short 11-question survey by Friday, September 16 at www.facesofmbc.org to explore how women living with MBC want to connect and share with others. For each survey completed, Genentech will donate $5 for programs and services specifically designed for women living with MBC.
Help Us Spread the Word
Please help us spread the word about this survey. Everyone can help!

Forward this e-mail to anyone you know who has metastatic breast cancer and might be interested in participating or visit www.facesofmbc.org and select the “tell a friend” link
If you are on Facebook, consider sharing a post like the one below as a status update
- If you are living with metastatic breast cancer, please share your voice by Friday, Sept. 16: www.facesofmbc.org. Genentech will donate $5 per survey completed for programs and services for women living with MBC.
- I shared my voice about metastatic breast cancer at www.facesofmbc.org. If you are living with MBC, I hope you will, too.
If you are on Twitter, share a tweet like the one below with all of your followers
- If you are living with MBC, please share your voice by Fri. Sept. 16: facesofmbc.org Genentech will donate $5/survey #FacesofMBC

Thanks for completing the survey and spreading the word.

I've been working in the garden....

2011-09-08T09:56:00.000-07:00

All the live-long day!

Well, not quite. But yesterday I managed two full hours of weeding and putting down weed-prevention "paper," and the day before I got in about an hour's work. I find it curiously satisfying to yank out the weeds. In a way, it's like ironing or polishing the silver. You start off with an untidy mess and when done, voila! Looks like new.

I hope to finish weeding the strawberry bed today or tomorrow (it's about an eight hour job, total) and maybe get to some of the other side of the house while we still have so much sunshine.

Yes, folks, the sun has been shining in Seattle for a week straight and we have hopes for continuing sunshine through the weekend. At last we're having summer! If this continues, not only will the rest of the cherry tomatoes and Chester berries ripen, my six green Early Girl tomatoes may even get red! Already a couple are showing a bit of orange blush. I might still get a vegetarian "bacon," lettuce and tomato sandwich this year!

More hair?

2011-09-06T17:01:00.000-07:00

Because I go without a head covering at home much of the time (and all of the time in this hot weather), Rik and I have both noticed that I appear to have more peach fuzz-type hair than earlier this summer. I don't know if this is because of being off chemo for the past three weeks. Things may change when I start treatment again, scheduled for next Monday. But for the moment I have dark fuzz all over my head.

And I still have eyelashes. (That I attribute to daily use of Physican's Formula Eye Booster 2-in-1 Day & Night Lash Boosting Serum, because the last time I lost my hair, my eyelashes all fell out too.)

Another good article on breast cancer mets

2011-09-05T16:31:00.000-07:00

I came across this today in my weekly Google Alert for metastatic breast cancer:

Search for the Cure May Leave Women with Metastatic Breast Cancer in the Dust

Thank you Heather for writing about this in the public. There are too many women living with mets and we rarely have our story told.

If you read the story, be sure to scroll down to the insightful comments at the end.

Fruitful garden

2011-09-05T14:34:00.000-07:00

Here's what we harvested from our garden today:

Chester berries
(a thornless blackberry)

September-bearing raspberries

and cherry tomatoes!

And here is the final product -- blackberry cobbler, recipe courtesy Gourmet Magazine. I made ours with blackberries only (no peaches) and made cookies out of the extra biscuit dough.

"There’s only two things that money can’t buy. And that’s true love and home grown tomatoes.” (Guy Clark)

Sunny Seattle

2011-09-05T12:50:00.000-07:00

When the sun shines in Seattle, it's a good time to work in the garden. Our recent house-sitter S is an expert gardener and did a lot of weeding while she was here, especially in our vastly overgrown herb garden. It's basically bare ground now, with a large rosemary bush remaining in the center and a few other items that have been given a "haircut." I've invited several local friends who have lovely gardens to come over and give me the benefit of their expertise. Who knows what I will decide to plant there now that it's no longer crowded with weedy mint, shasta daisies and other unwanted plants?

I have been able to weed the strawberry patch myself. Working slowly over several days, I've been able to get rid of about half the grass and weeds growing among the strawberry plants. My aim is to finish this week while we have good weather, working in the mornings when the strawberry patch is in some shade. Then I need to seriously mulch this bed so that I'm not repeating so much of this work again in the spring.

Rik has uprooted some unwanted plants for me, taken away my weeding remains, and done a lot of outdoor house maintenance today. It's his last day before returning to school and I think he feels the pressure of a self-imposed, unfinished summer to-do list. His last project, after a lunch break, will be to cut back the laurel hedge lining our driveway.

It might be Labor Day, but we're working hard!

Summer bounty

2011-09-01T19:40:00.000-07:00

Our corn harvest -- all eight ears of it. Some of them were really tiny but delicious. They became a delicious corn soup, eaten with garlic bread.

And some of today's ripe cherry tomatoes. Yummy!

Alaska

2011-08-31T20:01:00.000-07:00

Last week Rik and I joined my mother, sister, brother-in-law, nephew and niece for a family vacation on an Alaskan cruise. We took the Sapphire Princess north to Ketchikan, Juneau, Skagway and Victoria BC.

Sapphire Princess docked in Skagway.

Although I felt ill for most of the trip with mouth sores and that viral infection, I was able to enjoy our excursions to see bears, whale watching (or as the guide put it, whale waiting), a little shopping, a lot of eating and general family togetherness. We haven't all been together since the unveiling of my father's gravestone more than three years ago.

A bear eating fresh-caught salmon.

The view of Tracy Arm fjord from our cabin.

Without question the highlight for me was seeing the bears and watching the salmon run. I also really enjoyed the one day I stayed abed, cuddled in a comforter and looking at the Tracy Arm fjord. It was a brilliant idea to have two cabins with adjoining outdoor balconies. (I asked for one in case I needed to stay in bed -- a good call -- and my sister decided that was a good idea for her as well.)

Good news!

2011-08-31T16:31:00.000-07:00

Monday's CT scan indicated that my liver mets are getting smaller, although there are still seven of them. On top of this, my CA 27.29 tumor marker has fallen yet again from that all-time high of 300, to 150 at the end of June, now at 85! Altogether this means that the Abraxane/Avastin combo is really working.

Dr G says that he wants to keep me on this chemo combo. When my CA 27.29 drops to normal (30), he will order a PET/CT scan to check on where in my body I have active mets. Then he'll order another couple of rounds of chemo before he gives me a "vacation."

Although this was truly good news, it still is hard to face more months of chemo. If my tumor marker continues to fall at this rate, I am predicting about two months of active treatment before a PET/CT scan will be possible. A round of this chemo combo is three weeks on and one week off. Then another couple of months of treatment after a scan. I feel challenged by spending that much more time bald, feeling poorly, with low energy, etc. But if it will kick my cancer into submission, then somehow I will find the inner strength to keep doing it. And all indicators appear to show that this treatment does indeed work for me.

As an aside, I told Dr G about feeling stuffy and having a runny nose for the past two weeks, plus a mouth sore that won't go away. He suspects either I have allergies (hah!) to explain the nose and sinuses, or that I have a viral infection. It's likely not chemo-related, since my white blood cell counts are not low and that's what usually causes mouth sores.

He bumped up my dose of valacyclovir from 500 mg daily to 1000 mg twice a day to wipe out any viral infection. He also recommended Allegra in case it is allergies, but I am reluctant to take that at the same time and have it mask the symptoms. Then I'll never know if I have allergies or a viral infection. (I may have had a viral infection in my mouth and throat last summer. Or it may have been a side effect of the Doxil. We'll never know, since I was treated for both.) Plus I am more anemic than usual, which explains my feeling tired all the time.

All this helped me understand why I felt so bad on our recent Alaska cruise. I really was sick, and no amount of hot water with honey and lemon, using the neti pot, or gargling with a salt water/baking soda solution could really help.

Dr G is giving me another week to recover from whatever is going on in my head and mouth. My next chemo is scheduled for September 12, presuming I feel better.