Another sunny day

It's finally summer in Seattle. We've had a couple of days of sunshine and warm temperatures, and that meant cooking, grilling and gardening to me.

Friday started with a lesson in Yemenite cooking at synagogue. One member has enjoyed a decades-long friendship with the family her husband stayed with as a volunteer during his college years. It happens that this is the same Moshav Amka I stayed at in 1978, and L was convinced she could figure out which family hosted me so long ago. Evidently there were only a few families who took volunteers. I do hope she can help me reconnect with those gracious people who let 18-year-old me into their home for a month.

 Yesterday I grilled a most delicious Shabbat diner of beer-butt chicken, patty pan squash and onions, and peaches for dessert. The chicken and vegetables went with a salad of cut melon, cucumbers and jicama dressed with fish sauce, minced ginger and a little hot sauce. The grilled peaches (so delicious!) went with raspberries picked fresh from our garden just before dinnertime and we threw some chopped chocolate on. The hot peaches melted the chocolate and became a sort of peach Melba.

Today after services I spent some time in the garden, fueled no doubt by the double strength iced coffee I had after lunch. I weeded the small pathway between the raised beds by our deck, placed grey fabric on top that is supposed to keep the weeds down, and put bark over it all. It took about an hour all told and I felt good doing the work. No aches afterwards, either.

That justified a stretch in the hammock with a book. A good day!

Seattle sunshine

We spent the day at a friend's "farm" in Redmond. She used to keep chickens and goats, but now there are *only* a horse, a pony, four dogs, seven cats and a bird. Pumpkin used to love going to the farm and romping with all the animals, but Bobka did not enjoy himself as much. He spent much of the time sitting on either Rik or I, occasionally sitting on the floor and once or twice exploring the house. (The exploration ended quickly when he poked his nose into a dog crate while it was occupied; said occupant growled and sent Bob skittering away.)

'Da bird

After a walk through the meadow, some time in the horse ring doing agility with the dogs and a lunch of crepes filled with ricotta cheese and jam plus chocolate egg creams made with Fox's U-Bet chocolate syrup, we stopped at Sears to return some Lands End merchandise (no paying a return shipping charge!) and then got caught in rush hour traffic on the way home. We are enjoying some late afternoon sunshine now and I'm thinking about lighting the grill to cook dinner, maybe making a cocktail of vodka and sour cherry juice.

I also stopped at the local farmer's market and bought three kinds of cherries: Rainiers for Rik, a less-sweet varietal for me, and then some Montmorency pie cherries. I learned this farm could sell me a bucket of stemmed, pitted Montmorencies so we can make vishnik. I have sent an email to their office and we will see what they charge for a bucket. We would need 25 - 35 pounds of pie cherries to make vishnik. In the meantime, cherry pie is in our future!

Can you believe that I had chemo on Monday?


 Dad's Chocolate Egg Cream Recipe

Into a tall glass, spoon one inch of Fox's U-bet chocolate syrup (Dad permitted no substitutions!). Add one inch of milk. (Whole milk makes the best foam; low fat not so much.)

Tilt the glass and pour seltzer off a spoon to make a big chocolate head.

Stir. Drink. Enjoy!

Abraxane #7

I forgot that the Abraxane/Avastin combo is given with both drug sin week one, then Abraxane only in week two, and nothing in week three. Today's chemo went smoothly otherwise, even if I am still not prepared for how long everything takes. First we wait for the lab to have a nurse ready for me, then we wait to be called back into the chemo area, then we wait for the lab to process my blood samples, then we wait for Dr G to approve my counts from the lab, then we wait for the pharmacy to make up my drug. We arrived at the Cancer Institute at 9 AM and were finished at 12:15 PM. That's actually a half hour shorter than when I get the Avastin.

Then we were off to Cafe Presse for lunch. Presse is definitely my favorite restaurant on Capitol Hill. Nothing ever disappoints. Sometime we will have to pre-order the roast chicken (it takes one hour). Rik had the new falafel plate: four crunchy falafel balls on a salad of melons and olives, with in honey-yogurt dressing. I guess this is French food by immigration, since there are so many North African's who have moved to France in recent decades. Plus in the very pork-centric menu, there aren't too many vegetarian options. I had the sandwich en baguette with chicken liver pate and the city's best green salad (butter lettuce with hazelnuts and vinaigrette). Plus we shared an order of extra-crunchy, Belgian style frites. I had no room for the hot chocolat chaud, which believe me I would have enjoyed on this cold, rainy day.

Home for a nap, from which I have just awoken. I am not sure I have room for dinner and may have overeaten at lunch. I am sure some seltzer will take care of that.

All is all, this chemo regimen seems to be pretty manageable. Eyelashes are still hanging in there; we'll see what this week brings. I go back for an injection of Neulasta tomorrow morning to bring my white blood cell counts up.

Lashes and brows

One of the most annoying aspects of chemo-related hair loss is when you lose your eyelashes and eyebrows. Eyelashes play a surprisingly helpful role in everyday life, by filtering dust and whatnot from getting into your eyes. Eyebrows bring definition to your face and I at least find that I don't really look human, much less normal, to myself without brows.

Earlier this spring I found a new product in the cosmetic aisle at my local drug store that I decided to try. Physician Formula Eye Booster is supposed to "enhance the appearance of lashes while providing the instant definition of a liquid eyeliner, in one easy step." To my surprise, it worked! After six doses of chemo, and after losing most of my hair and brows, I still have eyelashes! I have tried both the clear serum and the one with eyeliner, but found that the brown eyeliner made my eyes tear and thus washed away almost immediately after applying.

I also use a MAC Powerpoint "Buried Treasure" soft eye pencil (charcoal grey color) over my upper lashes and to line my lower lashes. My friend N taught me to use a small angled brush to draw eye brows, instead of using an eyebrow pencil. She helped me choose  "MAC Mystery" satin (brown) eye shadow to brush over my brow bones and through my remaining eyebrow hairs. All of this helps give my eyes more definition, and makes me feel that I look more like myself.

It's way more makeup than I am used to wearing, but it gives me confidence. And apparently has kept my eyelashes!

Too busy

Things are very busy around here lately. I have numerous calls to make on synagogue business; want to visit a friend who' in hospital; offered to bake for a shul meeting and our community level of kashrut means I have to use the synagogue's kitchen; choir rehearsal tonight and a friend in town for a conference. I think it's time I got started!

Quick check in

Today's chemo (Abraxane/Avastin #6) went well, but took far too long. Much as I love Dr G, he wrote today's orders for the wrong date and it took several hours for him to rectify the situation. Meanwhile we waited. And waited. We arrived on time at 11 AM; got the okay to go to the lab at 11:45; were called in for treatment at 12:45 PM and finished everything at 3:45. An brown sugar-buttermilk ice cream with hot fudge sauce at Mollie Moon's afterwards helped relieve some of my frustration. (I allow myself to eat anything I want to on chemo days.)

The highlight has to be a chance encounter with another member of Walnut Hills High School's class of 1977. K and I didn't run in the same circles then, but she recognized me sitting in the waiting room and we had a short chance to catch up. Rik gave her a card and I hope she will be in touch. From what I could gather quickly, she has a breast cancer story to tell also.

Today's haul

The sun is shining in the late afternoon and I wanted some vitamin D straight from the source, so I picked five and a half pints of raspberries. We shared some with neighbors but most will go straight into the freezer. It's been a bumper year for raspberries so far, but Rik has found only a small bowl of strawberries every day or two. There appear to be many chesterberries on the canes and the blueberries are ripening nicely, even with the cool temperatures we've been experiencing lately. I have hopes for at least one tomato that has already fruited, but can say no more about the others. Many flowers, no other fruit yet. It's just not sunny enough this summer.

I feel bad for those of you sweltering on the rest of the continent, but we actually had the heat on last night, it was so cold here.

Make your voice heard about Avastin

 Today I received an email from FREEDOM OF ACCESS TO MEDICINES, asking me to take action about keeping Avastin available for women with metastatic breast cancer. I did, and so can you.

IMPORTANT: SEND YOUR AVASTIN COMMENTS TO THE FDA'S OFFICIAL DOCKET BY JULY 28, 2011

If you were unable to speak the FDA's hearing (or even if you did speak) but want to register your opinion in the official record, you can do so in two ways, one online, the other through the mail. Comments must be submitted by July 28, 2011.

Electronic comments may be submitted by going here.

If you have any problems with the above link, this is an alternative approach,

You may also submit written comments to the Division of Dockets Management, (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Room. 1061, Rockville, MD 20852. Please remember to make a reference to the Docket No. FDA-2010-N-0621

What you write it up to you. It is extremely important that you use this opportunity to enter your opinion in the official record. If you do not like any aspect of the Avastin decision or process leading up to the decision, this is your chance to make your opinion known. While some may be discouraged at the way the ODAC committee voted, this entire matter is far from complete. So speak now or forever hold your peace.

PLEASE SIGN THE FAMEDS PETITION

If you have not had the opportunity to do so prior to now, please sign the FAMEDS petition.

Thank you for your support – it is vital to the Avastin women that they know that you stand with them in this battle.

Lymphedema update

I realized that i haven't blogged about lymphedema recently. I am pleased to report that it has hardly bothered me at all since getting the big blue Jovi Pak arm sleeve. My last post on lymphedema issues appears to have been in October 2010.

I wear the sleeve every night, adding extra foam pieces to break up edema as needed or to improve the sleeve's fit. Because this sleeve was made to measure, and I bought it when I was in the middle of a flare up, it is just a tad larger than I need now that my arm is stable, particularly in the hand.

I wash it weekly, and so on Sunday nights it fits beautifully, having shrunk the tiniest bit in the dryer. In the next day or so I begin to add extra padding on the back of my hand. By the end of the week I am wrapping some bandaging around the hand, wrist and forearm to provide extra compression, and then I wash it again and start the whole process over.

It was very easy to put on at the airport for our recent flight to Toronto. That meant I could go through security with a naked arm; give myself the injected lovenox an hour before flying; and put on the gizmo and wrap my arm at the end of all these precautions. When flying, I wore it with a glove to provide enough compression in my hand. That was a little too tight, but it did prevent me from having any issues when we landed.

All in all it's been a good purchase, and I am delighted to have full use of my arm during the day when I'm active, in exchange for compression at night when I am sleeping.

Now if only I could get some better sleep. But that's a story for another day.

Summer in Seattle

This is how we dress for summer in Seattle. July isn't much different from October in some years....

The gypsy look

I don't know what makes me wear a print top, a wildly printed scarf and the long earrings together, but combined this is my gypsy look. Plus now you can really see my new glasses.

I take these photos through my Mac's Photo Booth software, which uses the built-in camera at the top of the monitor. It's nowhere near the highest quality pic, and Rik hates when I take one with it, but it does give me the chance to take a photo of myself.

The progressive lenses are terrific so far. It's only been two days, but my vision has improved with the new prescription and the non-bifocal bifocals have made everything easier. I can read the newspaper again without having to hold the comics up to my eyes to read over the rim of my glasses.

The sun has finally come out and I believe I will pick the rest of the ripe raspberries. It might be cool here in Seattle, but  I love that fresh summer fruit growing in my back yard!

All is fine

Everything is good here, just busy. Briefly:

Last Friday we had an opportunity to buy a new, all-electric Nissan Leaf. It took until Saturday morning to figure out how to charge the thing using 110 v home power, but now all is great as we tootle around town NOT USING ANY GAS! Some time soon we will have a higher power home charger.

On Saturday we had dinner at friends who love to cook. Way too much food and wine but a lovely time was had by all.

Sunday saw some yard cleanup in prep for a dinner party here -- the members of my shul's executive committee. Again, too much food and wine, but a lovely time had by all (including Graeter's ice cream for those lucky, hard-working volunteers!).

More running around today, to get a pedicure and to pick up my new eyeglasses. They are progressive lenses (what we used to call bifocals) and are terrific. It may take me a couple of days to get used to them but the prescription was spot-on from the moment I put the glasses on the first time. Then I had to do my annual re-arrange and re-stock of the emergency supplies so I could change out the oldest spare pair of glasses.

All in all, I am pooped.

Recent pix

Too bad I wasn't invited to the royal wedding, eh?

How to live

I'm proud to say I never stopped doing any of these things. Maybe this is why I've lived with metastatic cancer for so long. I have no other explanation, other than random chance.

‎"In many shamanic societies, if you came to a medicine person complaining of being disheartened, dispirited, or depressed, they would ask one of four questions. 

When did you stop dancing? 

When did you stop singing? 

When did you stop being enchanted by stories? 

When did you stop finding comfort in the sweet territory of silence?" 

~ Gabrielle Roth

Back on the chemo track

I had Abraxane and Avastin today for the first time in five weeks. They were so busy at the Cancer Institute (90 patients!) because of the Independence Day holiday on Monday. It took four hours from arrival to finish, but I also got my monthly Xgeva and didn't mind waiting for that for a few minutes. I go back tomorrow for Neulasta so that the chemo combo doesn't drop my white blood cell counts too far.

If the Abraxane/Avastin combo dropped my tumor marker by 150+ points in four doses (it fell by more than half of the highest point), do you think that four more doses will bring my CA 27.29 to zero? 

And wouldn't that be great?!

Summer bounty

In the past few sunny days we have harvested strawberries, rhubarb and now raspberries! Here is a peek at the combo cobbler before it went into the oven (the rhubarb is on the bottom, hard to see). 

Yum! I love summer!

This I believe

I

I should have posted this on Independence Day. Robert Heinlein is my favorite author. At age 16 or so I wrote a fan letter to him. Much to my surprise, I received a response from his wife Virginia, a form letter with a handwritten note.. It's still a treasured possession. I was driving in suburban Washington DC when I heard the news that he had died. Later that week I attended a ceremony and screening of the film he wrote, Destination Moon, at the National Museum of Air and Space (I was practically the only woman there).

(You can listen to a recording of Heinlein reading here.)

THIS I BELIEVE

by
Robert A. Heinlein

Robert A. Heinlein wrote these words in 1952 and delivered them to a national radio audience in a broadcast interview by Edward R. Murrow. His wife, Virginia Heinlein, read them when she accepted on his behalf NASA's Distinguished Public Service Medal on October 6, 1988, awarded him posthumously.

I am not going to talk about religious beliefs, but about matters so obvious that it has gone out of style to mention them.

I believe in my neighbors.

I know their faults and I know that their virtues far outweigh their faults. Take Father Michael down our road a piece --I'm not of his creed, but I know the goodness and charity and lovingkindness that shine in his daily actions. I believe in Father Mike; if I'm in trouble, I'll go to him. My next-door neighbor is a veterinary doctor. Doc will get out of bed after a hard day to help a stray cat. No fee -- no prospect of a fee. I believe in Doc.

I believe in my townspeople. You can knock on any door in our town say, 'I'm hungry,' and you will be fed. Our town is no exception; I've found the same ready charity everywhere. For the one who says, 'To heck with you -- I got mine,' there are a hundred, a thousand, who will say, 'Sure, pal, sit down.'

I know that, despite all warnings against hitchhikers, I can step to the highway, thumb for a ride and in a few minutes a car or a truck will stop and someone will say, 'Climb in, Mac. How how far you going?'

I believe in my fellow citizens. Our headlines are splashed with crime, yet for every criminal there are 10,000 honest decent kindly men. If it were not so, no child would live to grow up, business could not go on from day to day. Decency is not news; it is buried in the obituaries --but it is a force stronger than crime.

I believe in the patient gallantry of nurses...in the tedious sacrifices of teachers. I believe in the unseen and unending fight against desperate odds that goes on quietly in almost every home in the land. 

I believe in the honest craft of workmen. Take a look around you. There never were enough bosses to check up on all that work. From Independence Hall to the Grand Coulee Dam, these things were built level and square by craftsmen who were honest in their bones. 

I believe that almost all politicians are honest. For every bribed alderman there are hundreds of politicians, low paid or not paid at all, doing their level best without thanks or glory to make our system work. If this were not true, we would never have gotten past the thirteen colonies.

I believe in Rodger Young. You and I are free today because of endless unnamed heroes from Valley Forge to the Yalu River.

I believe in -- I am proud to belong to -- the United States. Despite shortcomings, from lynchings to bad faith in high places, our nation has had the most decent and kindly internal practices and foreign policies to be found anywhere in history. 

And finally, I believe in my whole race. Yellow, white, black, red, brown --in the honesty, courage, intelligence, durability....andgoodness.....of the overwhelming majority of my brothers and sisters everywhere on this planet. I am proud to be a human being. I believe that we have come this far by the skin of our teeth, that we always make it just by the skin of our teeth --but that we will always make it....survive....endure. I believe that this hairless embryo with the aching, oversize brain case and the opposable thumb, this animal barely up from the apes, will endure --will endure longer than his home planet, will spread out to the other planets, to the stars, and beyond, carrying with him his honesty, his insatiable curiosity, his unlimited courage --and his noble essential decency. 

This I believe with all my heart. 

©1952 Robert A. Heinlein

Happy Independence Day

In the USA we call it the Fourth of July, but we really mean Independence Day.

We've been busy all weekend. On Thursday evening, we attended the wedding of Rik's colleague. On Friday we hosted friends for Shabbat dinner. Saturday brought both of us to services at synagogue; I led the Torah service and Rik was an usher at the front door, welcoming people. It was an exceptionally large crowd, many guests present for the aufruf of a long-time member's daughter. (An aufruf takes place when the groom -- and the bride, at Reform, Reconstructionst and Conservative congregations -- are called to the Torah for an aliyah in celebration of their marriage.) Sunday saw us at this wedding (imagine: two weddings in the same week!). Today we went to friends for brunch AND helped another friend celebrate becoming an American citizen. Click here for the story and a link to photos.

Now that's the way to celebrate Independence Day. Between her red and white garb (the colors of Canada, her country of origin), little US flags everywhere, strawberries, cherries, and blueberries, bagels and cream cheese (their favorite food), my maple leaf shaped shortbread cookies, the red and white maple leaf running shorts (which no one wore, sadly), Rik's hockey jersey, and a bundt cake frosted in red,white and blue icings, it was a festive afternoon. She had been at the Seattle Center since early in the morning, for the preliminary items. There was an hour of music and the swearing-in ceremony took place at noon. Then more paperwork, and off to home. We were honored to be among the Canadian friends and their neighbors.

It's Sunday evening and I am pretty tired from all the hoopla of the past few days. I anticipate it might be hard to have a quiet night, since many people around here like to light their own fireworks on this night of nights and the noise has already started, hours before it will be dark enough to see anything exploding in the night sky. Bobka the dog may find the noise tough, so we will give him extra cuddles and reassurance.

Tomorrow starts the regular week of activities. Chemo is on Wednesday, for the first time in about five weeks. I guess I am about as healthy and recovered from shingles as can be, so bring it, baby! Let's kick some more serious cancer ass this week.

Happy Canada Day

To all you Canucks and Icebacks!

Next step

We met with Dr G yesterday and he confirmed that my CA 27.29 tumor marker had dropped more than 150 points since the April high of 299. This is good news indeed!

The next step is to continue more of the same treatment, since it appears to be working so well. That would be Abraxane plus Avastin, hopefully despite the FDA's recommendation to their chair not to approve Avastin for metastatic breast cancer. It is still possible for a physician to treat a patient "off label," meaning to use a drug for a condition for which the FDA has not approved it. But someone has to pay....

Avastin is clearly working well for me as a booster accompaniment to Abraxane. When I was on Abraxane alone a year ago, we did not see such a dramatic drop in my tumor marker.

I expect I may have to request a case manager from my health insurance company to help me get approval for off label use of Avastin, should the FDA chair support the committee's recommendation. But I am a good squeaky wheel, patient (what else do I have but time?), pleasant (or so I have been told) and persistent in getting what I need to continue my quality of life.

In other news, I may be overdoing it these past few days. After seeing Dr G yesterday, we had lunch, I went to my support group while RIk read a book, came home and made dinner for a sick family in our congregation, then went to a wedding reception for Rik's colleague from Roosevelt high school. It might have been a but much -- I didn't sleep well for a second night in a row and plan to use the ceiling fan to cool the room tonight in an effort to get better sleep without drugs.