New mantra

I keep forgetting to post this....

Since my wig is made from artificial hair, which is flammable and could melt if exposed to high heat, the salon told me to never open a hot oven while wearing it. The whoosh of hot air escaping through the oven door could melt a wig.

Now, I bought this wig about two years ago and hardly wore it until this past fall. That's  when I discovered the wig was almost as warm as wearing a hat outdoors and way more comfortable to wear indoors. So Rik and I created a new mantra: "Don't put your head in the oven while wearing your wig!" We say it together when I'm cooking dinner. I say it aloud to myself when I'm baking. (Yes, talking to oneself is a sign of extraversion.)

Last week, while baking cookies, I forgot I had on the wig. What did I do? I forgot to say the mantra, and I started to open the oven door.

Luckily I realized what I was doing right away, closed the door, and removed my wig to check for damage. Thankfully there was no melting and no fire.

So everyone, the next time you're cooking or baking, say it with me:

"Don't put your head in the oven while wearing your wig!"

(Maybe this should be the title of my book...)

Make a pledge

I'm checking out a new micro-fundraising model on Kickstarter.

Donors pledge at least one dollar to help a project. Your credit card gets charged only if the organizers reach their goal. Plus you can help them reach their goal through social media, email to friends, blogging, etc.

I chose to support the first annual Balkan Night Northwest. Modeled after a similar event in New York City, it brings together musicians, singers and of course dancers. So close to my heart, I just had to make a pledge. (Full disclosure: Dunava is performing at this event.)

As an advocate of charitable giving, I hope you will check out the Kickstarter website, look over the many projects, and find something that speaks to your soul.

After all, what's one dollar in the greater scheme of your spending?

For Seattleites: I sing with Radost

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...

(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

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

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

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

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

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

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

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

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

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

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

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 in liver)

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

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

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

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

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