Port update

Well, everything went smoothly today. Check in was on time at 6:30 AM, followed by a walk to the surgical prep area, where I got undressed and out on a hospital gown and robe and was asked numerous questions. An IV nurse started a line in my right hand, after saying that she didn't think she was allowed to touch my (bandaged) left hand. So the bandaging really works as a noticeable deterrent.

The interventional radiologist (IR) doc came in for a visit. We hadn't seen him in years, since he placed my first port. When we asked if he knew how long it had been, he told us it was before the hospital got a new computerized records system, so the best answer we can arrive at 4-5 years.

They were a little late taking me to the IR procedure room, where three nurses and techs descended on me. I transferred from the gurney to the scanner bed. They cleaned and draped the area on my right chest and placed a surgical drape over my face (on a frame to keep it away from my eyes). I was able to turn my head and look out the left side. No claustrophobia issues there. They placed an oxygen mask over my nose and mouth when the cannula up my nose bothered me. Then they gave me an antibiotic and started the Versed and fentanyl.

I became VERY relaxed but didn't fall asleep. I didn't notice them giving me local anesthetic. I could hear them talking to each other throughout the procedure but I didn't know what they were doing or understand the terminology, so it didn't bother me. The whole thing went very smoothly and I was well cared for the entire time.

An orderly wheeled me back to recovery, while the IR went doc spoke with Rik in the waiting area to reassure him I was fine. Rik promptly called my mom, his mom and my sister. He came back to my recovery room and spoke with the IR doc about Canada and photography while I devoured a tuna salad sandwich on whole wheat bread, potato chips (baked not fried, it's a hospital after all), water and apple juice. The red Delicious apple didn't appeal to me, and I saved the cookies for later.

Once they let me up and about, we went to the Ambulatory Infusion Center yo get my zometa. The IR team had left my port accessed so it was the work of moments to hook up saline and the drug. Rik brought me a decaf mocha and a huge chocolate-chocolate chip cookie and then got himself some lunch. (The Swedish-Cherry Hill hospital has the best hospital cafeteria in the area.) The zometa finished around 1:30 PM and we went straight home.

I've been napping on the sofa for the past three hours, tossing and turning a bit and snuggled with dogs much of that time. But at 4:30 PM the dogs were telling me they were too hungry to wait any longer for dinner. After all, they'd had breakfast at 6 AM! Rik fed them and I decided I was awake enough to blog.

Post-op care: No driving or alcohol for 24 hours (no hardship there). No shower until Friday (that could be a stinky problem). Take pain meds as needed. Be aware of signs of infection such as redness at the site, elevated temperature, etc.

I believe I will recover quickly and will keep all informed!

New port

I'm off this morning before the crack of dawn to get a new port. Had to bandage my arm so that no one gave me a needle stick in the left hand or arm by accident. Or tried to take my blood pressure. I'll say one thing for the bandaging -- it's hard to ignore.

The new power port should be an improvement over the current portocath. Still, there is risk associated with any anesthesia and procedure. I hope to be blogging again later today.

Unexpected test and more

I spent a marathon afternoon at the hospital today. I was supposed to get my monthly infusion of zometa but the nurses were unable to access my port after trying four times (ow).

The infusion nurses paged my oncologist. He ordered an immediate specialized xray of the port through interventional radiology. Luckily they could see me right away.

Interventional radiology said I needed a new port. The doc was able to access it but found a clot beneath the port. They gave me a choice between Tuesday (tomorrow) and Wednesday -- then oops! we don't have a slot on Tuesday. So on Wednesday at 6:30 AM I report to the hospital to get a power port.

Assuming all goes smoothly, the procedure will take about an hour under conscious sedation (where you don't remember what they're doing but you can talk to the docs if they need you to). Then I spend an hour in recovery. They will leave my new power port accessed so I can get the zometa I was supposed to have today.

All in all Wednesday is looking like a long day. Oy. Happy new year to me!

And the onc says....

I saw Dr. G, Seattle's best oncologist, yesterday and he has finally come around to estradiol therapy. This is a new concept that came out of the 2008 San Antonio Breast Cancer Symposium.

I will stay on the Fareston (toremifene) for six more weeks, to give it a chance to work. In that time I will have two blood draws, so we will see if my tumor markers decrease. If there is no change, or the markers continue to rise, then I will start estradiol, hopefully before RIk departs for his trip in February.

I am still on the merry-go-round but happy to try another estrogen-based therapy rather than chemo. My cancer is so ER+ that these drugs should all work more effectively for me that chemo. And given my bout with 5 FU last year and subsequent hospitalization, I'd like to keep pushing off chemo for as long as possible.

What Jews do on Christmas

For those of you who would like to know what the rest of the world does when so many celebrate Christmas, here is our typical day.

EVE: Eat dinner, maybe with friends. Watch a movie.

We actually hosted friends for dinner. Afterwards he went to volunteer overnight at a shelter and she stayed with us for a sleepover. We watched "Night at the Museum 2" which was filmed in several Smithsonian Institution museums and along the National Mall. It was funny, but boy do you have to know your history to get all the jokes!

DAY: Meet friends for Chinese food. (This is a long-standing American Jewish tradition. For many years the only places open on Xmas Day were Chinese restaurants because most Chinese didn't celebrate Christmas.) Watch a movie. Get together with friends to play board games. Go skiiing.

We ate breakfast in our jammies, and our friend N stayed until it was time to leave for lunch at Chiang's Gourmet, which serves the best Chinese food in Seattle. There were eight of us at lunch and we feasted on vegetarian spare ribs, tea smoked duck, three mushrooms, tofu with vegetables, garlic eggplant and vegetable mu shu. We arrived at 1 PM and the restaurant was half full, but half an hour later it was packed with many more Chinese-American families and a few Jews.

After lunch everyone came over here to hang out. We ate dessert and played games (Scrabble, Mille Bornes and Dominion). We watched the unaired pilot of "I Love Lucy" (probably unaired because it was spectacularly too long and poorly written. The best scene was Lucy as a clown "professor" of music, trying to help Ricky's band in their audition for television. Naturally, Lucy gets offered the job.)

And because December 25th fell on a Friday this year, our friends stayed for a potluck Shabbat dinner. L brought a salad, N and K made mashed potatoes, C helped me make pumpkin-peanut soup, A brought cold drinks and I roasted a beer-butt chicken and kale chips (recipe below). I don't know how we managed to eat again after such a huge lunch, but somehow the food disappeared.

From lunch through dinner, we spent almost as much time together as our Christian friends did with their family and friends.

I was so pooped after everyone left that I fell asleep on the sofa.

KALE CHIPS
(Serves eight, recipe halves easily)

2 bunches kale, stems removed and cut into 2" pieces
2 tbsp apple cider vinegar
1 tbsp extra-virgin olive oil
A few pinches of kosher salt

Preheat oven to 350 degrees and line a baking sheet with parchment paper. Whisk together vinegar, oil, and salt, and toss with kale leaves. Place in a single layer on cookie sheet and place into oven. Bake 10-15 minutes, flipping halfway through until crispy. Do not overcook or allow them to become completely brown as they will then taste bitter. Enjoy!

Family portrait

Every couple of years our synagogue organizes a photo shoot. Lifetouch Photo takes pics of everyone who signs up for a sitting. One 8x10 photo is free, but of course they want to sell you more pictures. In our case, we choose one group shot with the dogs and order extra copies to send to the parents. Then the company makes a photo directory with names and contact info so shul members know how to reach one another (and what we look like).

About half the members participated this year. We used to be among the only people bringing a pet, but this year at our sitting alone there were our two dogs and a puppy from another family. I don't know who was more excited -- the puppy or the small kids from the third family.

The photographer had no trouble getting Bob (now known as Bobka) to look at the camera, but Pumpkin must be growing deaf, because in every shot he is looking somewhere else.

Do we look cute or what?!

Backache

Is it backache or is it mets? Only her oncolgist knows for sure.

My back has been bothering me for a couple of weeks now. Maybe longer -- I recall telling Dr E, the rad onc, about it. His response was to say that even people with cancer get lower back pain.

Mine might be complicated by the fact that by turning 50, I have officially hit middle age; there is almost no estrogen running through my body (because my cancer feeds on estrogen); and I'm not as flexible as I was when I was dancing 10 hours a week.

So I try to stretch in the shower while under the hot water. I take pain meds as needed for when it really bugs me. And I plan to mention this to Dr G when I see him tomorrow.

Taking a break

It's that time of year again when Rik takes a break from teaching. Yes, winter vacation started and competition for the computer has begun! Rik has papers to grade, so he is working hard at the beginning of vacation to finish all his work and then be able to relax.

I realized early on that marrying a school teacher would be like having an early taste of retirement. Every winter for two weeks, every spring for a week (and every mid-winter for a week), as well as from the end of June until September, we are both home all the time. That means potential competition for scarce resources, such as the computer, TV remote and car. On the other hand, it means we walk the dogs together. On the third hand, I cook more meals since we both eat breakfast, lunch and dinner at home. Today's breakfast was poached eggs and leftover latkes. Yum!

I am sure we will both survive the togetherness and be ready for Rik to go back to school in the new year.

'Tis the season...for generosity

For all of you who want to support a worthy cause (and take advantage of the end of calendar year tax deduction), please consider Gilda's Club Seattle.

Named after actor and comedian Gilda Radner, who needed and found a place she could go to for support when she had cancer, Gilda's Club opens its doors to anyone living with cancer, their families and friends. I have been attending a weekly yoga class there for many years, since my cancer came back, and I am an active volunteer in raising funds to support this wonderful organization. I was even supposed to model and speak at their annual fashion show last spring, but went into the hospital with complications from chemo instead. I hope to model in 2010. All Gilda's Clubs programs are free.

The Isaac family quoted in the letter below are my friends Josh and Kim Isaac and their children. Josh lives with metastatic epithelioid sarcoma, a rare cancer that took his left hand. Gilda's Club has been terrific for their entire family. You can read more about Josh's story on his blog, Joshua's Space.

Dear Friends,

Gilda's Club Seattle has had a year filled with many successes and many challenges. Our services are needed by more people and the economy has made it harder to find the dollars we need to keep moving forward. We know we are changing lives. Please read the following letter received this past August from the mother of two of our Camp Sparkle campers. It will tell you about one of the many reasons that it’s so important for Gilda’s Club to be here when someone hears “You have cancer.”

“For the past year a social worker has come to our house and met with Jacob (8) and Sam (5) together and separately dealing with the emotions of having a father with metastatic cancer and anticipatory grief. In March, I ran the Mercer Island Half Marathon and while walking around the exhibits came across Gilda's booth. By this time, Josh had been in and out of the hospital with lung complications and it seemed as if finding additional support for Jacob and Sam might be needed. The staff member shared the Camp Sparkle information with me and when I came home from the race I shared it with Josh and we both agreed that going to this camp together would be a perfect intro into life at Gilda's.

So when summer started we explained to the boys that at Camp Sparkle they would be with other kids who have a family member affected by cancer and they would get to go swimming, to the park, the museums, etc. Day one and day two of camp were a bit shaky. Both boys reacted with their various defense mechanisms and Josh and I looked at one another as if perhaps we made a mistake by signing them up. However, we charged ahead and not once did they say that they did not want to go to camp, not once did they say they didn't like it and after day two they went skipping into the red door on Broadway. On the last day of camp, I walked into the lobby and a young girl came running up to me and said, "is Sam and Jacob's dad dieing from cancer?" I responded by shaking my head yes. Her response was "would it be ok if I pray for him?" Of course my response was, “YES please do!” Next, Sam came running up to me and asked if he could come back to Camp Sparkle next year? Of course you can I told him and then explained that he and Jacob could visit Noogieland once a month if they wanted to, resulting in a smile from ear to ear.

For the last sixteen years I have spent my career raising money for social services, explaining the need for funds to support those who need it the most in our society. Now I am on the other side of this scenario and have become a recipient of the generosity of those who are supporting Gilda's Club…a place I did not think that I would find myself. However, I can honestly say that Camp Sparkle is truly a gift to those families who are able to attend this incredible and magical camp. Jacob and Sam (and hopefully their sister Sophie, 2 years old) feel that Gilda's Club is a safe place for them to be, to talk, to have fun and to feel love and support.

Simply, thank you!
Kim Isaac

By all accounts, 2010 will continue to be an economically difficult year, but for people who have cancer, their challenges will remain the same. For those of you who have already remembered Gilda’s Club Seattle in your holiday giving plans, thank you so much. We need to be here in the community for all of the Sams, Jacobs, Sophies, Joshs and Kims whose lives will be touched by cancer…and we need your help. Please make a gift of at least $100 to Gilda's Club Seattle to help us continue to ensure that no one has to face cancer alone. Please send a check to Gilda's Club Seattle or donate through our secure donation page. You may also donate at www.firstgiving.com/gildasclubseattle.

We thank you and wish you and yours good health and happiness in the holiday season.

Sincerely,

Anna Gottlieb
Executive Director

I hope you will consider making a generous donation today.

What I want for Chanukah

Every Jewish Star Trek fan needs this for Chanukah -- a Star Trek menorah!

Seriously. Gene Roddenberry (ST's creator), stars William Shatner and Leonard Nimoy and actors Walter Koenig, Brent Spiner, and Armin Shimerman are all Jews. Nimoy created the Vulcan hand sign that goes with "live long and prosper" from the way the kohanim (Jewish priestly class) bless people. (My dad taught me this when I was a child on the theory that every Cohen needs to know how. You place both hands in front of you, thumbs near each other, and spread your fingers so there is a space between the second and third fingers.)

Once upon a time my friend G gave me the ultimate Star Trek gift. It's a photo of the original crew on the bridge of the Enterprise with a Barbie doll subbing for a blonde, female ensign. Star Trek Barbie has a place of honor on our bookshelf!

Click here to read about more Star Trek Jewish moments.

And the orthopod says...

Today I saw Dr. Daniel Flugstad, the orthopedic surgeon who pinned rods into both my femurs in 2002. This is a follow up from the recent bone scan that shows new metastatic cancer active in my right intertrochanteric femur and in the spine at T8 and T9.

After looking at the bone scan images and report, and a new x-ray taken just before my appointment, Dr. F says he would not recommend any surgery. The rods he pinned in 2002 are still providing good support and my legs are at no risk for a fracture. I guess my spine isn't either, because he didn't recommend surgery there.

He told me very sweetly that he thinks of me every so often and was glad to see me doing so well. I told him that thanks to him I dance, I walk the dogs, and I carry on. He smiled and wrote on my chart: "dances, walks, carries on."

Now the hand-off goes back to Dr. G (Seattle's smartest oncologist) to determine any next steps. I see him next week.

The rad onc says...

Today I saw Dr. Stephen Eulau, the radiation oncologist who has treated me several times over the past seven years. It's his opinion that, because the intratrochanteric mets in my right hip are so close to an area that has been previously irradiated, and because my pain is really no more than discomfort, it doesn't make sense to treat with more radiation at this time. Dr. E also would not recommend more testing, such as an MRI of that area, unless one of my other docs would like to see something.

On Wednesday I see the orthopod for his take on the situation. I imagine he will want to take x-rays of the spinal mets and right hip. Stay tuned for more information!

Happy Chanukah!

Tonight is the second night of Chanukah. It's really a minor Jewish festival, nowhere near as important as Rosh Hashanah or Yom Kippur, Passover, Sukkot or Shavu'ot. Shabbat, which we celebrate every week, is most important.

And yet Chanukah, the Jewish winter solstice festival, has taken on supreme importance in America only because it falls close to Christmas.

In our house, where there are no children to worry about comparing our holiday to a Christian holiday, Chanukah has limited scope. We light the Chanukah menorah every night. I make foods cooked with oil to remember the miracle of the oil lamp. We gather with friends on one or two of the evenings. But we don't exchange gifts and we don't set up decorations.

Instead I prefer to remember that Chanukah recalls the persecution of a minority group by the majority culture on religious grounds. Antiochus and his Hellenistic government harassed the Jews for their religious practices and desecrated the Temple in Jerusalem. The Jews, under the Hasmonean leaders (Judah the "Hammer" Maccabee), fought back and were able to restore their right to worship as they please. They rededicated the Temple, hence the miracle of the lights and our custom of lighting a candelabra.

This is a more significant message for Americans to remember: that in a free country, all should be able to worship freely. So whether you celebrate Chanukah or Christmas, Diwali or Kwanzaa, in the spirit of America's founding fathers, who promised freedom of religion to all, please remember that the person you wish a merry Xmas to may not celebrate the same holiday.

Words of wisdom from Star Trek

You know how I've been staying up too late at night recently, watching reruns of Star Trek: The Next Generation? I stay up for the first five minutes and if it looks familiar or promising, I watch the whole thing.

Last night was a favorite first season episode in which Lt. Natasha Yar is killed randomly and unexpectedly by an alien life form. As I recall, actor Denise Crosby wanted to get out of the job, and the writers did a great job of giving her a typically Star Trek last moment.

At the end of the episode, after the Enterprise crew has (yet again) defeated the alien enemy, they hold a funeral for Tasha Yar. This being the 24th century, she has recorded a holodeck image of herself and so instead of someone else eulogizing her, she gives a message to her friends on the bridge crew.

I found this line particularly poignant:

"Death is that state in which one only exists in the memory of others; which is why it is not an end. No goodbyes, just good memories."

Here's to life

This song came my way recently. You can have a listen here.

Shirley Horn
“Here’s to Life”

No complaints and no regrets;
I still believe in chasing dreams and placing bets.
But I have learned
That all you give is all you get
So give it all you’ve got.

I had my share, I drank my fill,
And even though I’m satisfied
I’m hungry still
To see what’s down the road, beyond the hill
And do it all again.

So here’s to life, and every joy it brings
So here’s to life, to dreamers and their dreams

Funny how the time just flies
How love can go from warm hello to sad goodbyes
And leave you with the memories you’ve memorized
To keep the winters warm.

For there’s no yes in yesterday
And who knows what tomorrow brings or takes away.
As long as I’m still in the game I want to play
For laughs, for life, for love.

So here’s to life, and every joy it brings
So here’s to life, to dreamers and their dreams

May all your storms be weathered
And all that’s good get better
Here’s to life
Here’s to love
Here’s to you.

Bone scan results

I got the results of last week's bone scan and indeed, the persistent ache in my right hip is an area of new metastatic activity. There is also some new activity in my thoracic spine (about where the bra strap rests). Clearly the Megace isn't working any more, and it's time to change treatments.

There are several ideas swimming around. I will start a new drug called toremifene. It's a sister drug to tamoxifen and we have no way to predict how well it may work for me. I did get a few months on tamoxifen, as I recall. You take it as a pill, by mouth.

I'm going to coordinate with my radiation oncologist and orthopedist to see how they want to be involved in treating the new mets sites. More on that later as I am able to get appointments.

Dr. G is looking into the monoclonal antibody Avastin (bevacizumab) to be given in combination with the chemotherapies Taxol (paclitaxel) or Taxotere (docetaxel) as a possible next step. These drugs are given by injection or infusion, so that would mean back to the hospital for treatment.

The thought of more chemo is scary, since the 5 FU was so toxic to me last spring. But as Dr. G says, everyone reacts differently, and just because I had a tough time with 5 FU doesn't mean Taxol or Taxotere will be the same.

As far as the toremifene goes, here is what I found about possible side effects from the American Cancer Society's web site:

Common --
hot flashes
nausea

Less common --
irregular menstrual bleeding
milk production in breasts
vaginal discharge
vaginal bleeding
"flare" reaction for the first week or two on the drug

Rare --
vomiting
loss of appetite
tremors
skin rash
hair loss
cataracts or changes in eyesight
swelling of hands and feet
mild decrease in white blood cell count with increased risk of infection
mild decrease in platelet count with increased risk of bleeding
increase in calcium blood level in the first 2 weeks of treatment
blood clots with symptoms such as pain in leg or calf, sudden shortness of breath, pain in the chest, trouble moving or speaking
fetal harm if pregnancy occurs during or shortly after treatment

Oy!

Gilda's Club spa day

I have been attending yoga class and volunteering as a fundraising consultant for Gilda's Club Seattle for quite a few years now. You may remember I was supposed to model in the fashion show last spring and make the pitch to ask for donations, but was hospitalized the day before the event with a serious infection.

Other than yoga and volunteering, I'm not especially active at Gilda's Club. Today, however, was spa day and I have always enjoyed participating in this activity. They divide up the day into two halves, from 11 AM - 2 PM and 2 PM - 5 PM. Local businesses send representatives to donate services such as massage, haircuts, makeup, manicures and pedicures. Plus there is always some fun arts and crafts project for those so inclined.

I showed up at 11 AM and signed up for a massage. Erin of Eastside Spine and Wellness gave me a delightful twenty minute chair massage, concentrating on my tight neck and shoulders. Then I wandered upstairs to receive a haircut from Erykah of Gene Juarez Salon in Northgate. She trimmed my bangs and evened out the top where my hair has grown in more quickly than any other spot since my last haircut. Eileen Fisher boutique had contacted some of their customers who donated gently used clothing for we cancer survivors to browse through and take home. Representatives from Mary Kay cosmetics were doing makeup. There was a bountiful lunch buffet also.

This spa day, which like all Gilda's Club activities, is free to people living with cancer. I passed a pleasant hour being pampered and taken care of, which in CancerLand can be a rare thing.

As you may know, charitable donations made by the end of December are tax-deductible for 2009. So if you are looking for a worthy cause to support during this season of giving, please consider making a donation to Gilda's Club, where people with cancer can come as they are for support, encouragement, and a little pampering.

Overnight French toast

When you have leftover challah, make this yummy overnight French toast. The recipe's quantities depends on how much challah is left and how much French toast you can eat. This is what we make for two people.

The night before you plan to eat:

Slice the leftover challah thickly and place in a heavily buttered or greased baking dish.

Make a custard by beating together about 1/2 cup milk, 2-3 eggs, 1/4 cup maple syrup, a dash of nutmeg and some salt.

Pour the custard over the challah. Refrigerate overnight.

In the morning, preheat the oven to 350 degrees. Bake the French toast for about 30 minutes until the top is golden brown and crunchy. The inside will be creamy and soft but fully cooked.

Serve with maple syrup (Rik's favorite) or with Greek-style yogurt (my favorite).

Delicious!

Still blowing my nose

It turns out that staying home or going out seemed to matter not at all -- I am still blowing my nose frequently. I can't seem to shake this cold; maybe I need to give it a week before it goes away. And I have been through tissues! Every coat pocket has a small packet of tissues. When I walk the dogs, I invariably have to add used tissues to the bag of dog poop.

Still, I am trying not to let this cold slow me down too much. I went to my Friday meeting and was productive, cooked a nice Shabbat dinner, went to synagogue on Saturday morning and then to a shiva minyan on Saturday evening.

I think today will be a typical Sunday: we had a hot breakfast of overnight French toast and walked the dogs. I will go grocery shopping since the fridge is empty. We have to bottle the plum hooch (The Pumpkin Plum) and the dishwasher is running even as I type to sterilize the bottles. I may make a pot of soup for lunch. And a nap seems likely.

That's a relaxing day!

Living with ... a head cold

I've been home with a head cold since Tuesday. Haven't even been out of the house except to walk the dogs. I don't get colds and flus very often, so when it happens I lose energy more than anything else.

After Monday's full day at the hospital, it didn't feel so bad to do nothing on Tuesday. But it's Thursday morning now and my nose is still stuffed, I woke up covered in sweat again, I'm tired of reading and watching TV and wish I felt either more ill or well enough to do something.

Maybe I will catch up on the ironing. Or bake cookies for Rik.

Or take another nap.

New mets?

While on the bone scanner bed yesterday, I kept getting tweaks from my right hip. Not pain per se, but annoying twinges that made me realize I might have new mets there.

I have had mets in both hipa before. They responded well to radiation and of course all the meds I have been on. This one feels like it's in a new place, toward the back of my hip (the others felt to be in the front).

My metastatic disease has always been symptomatic. That is, if I feel something, it usually means there is something to feel. When I developed mets in my forearms, I remember lying on the sofa unable to get comfortable. Each time I wriggled around it hurt more. I finally realized that I had new mets and went immediately to the doctor to have them checked out. Sure enough, new mets, needing radiation.

So this pain in my right hip has been bothering me infrequently for weeks. Then it became more noticeable more often. Now I feel it just about every day. Again, it's not precisely painful but annoying enough to take pain killers and call it to someone's attention.

It's a good thing I had the bone scan. I get the results next week and it would not surprise me to learn that there is something growing in that right hip area. That would definitely mean a change in treatment, something Dr. G and I have been discussing for months already.

I guess yesterday's bone scan was right on time.

Zometa and bone scan today

I am spending the bulk of the day at the hospital today, getting my monthly zometa infusion and a bone scan. Here's how today will play out --

11:00 AM Place topical anesthetic Emla cream over port site, cover with plastic tagaderm patch and drive to hospital. Run errands along the way. Park in the pay lot because this will be a longer than usual time at the hospital and I might not find 4-hour free street parking.

12:00 PM Show up at Ambulatory Infusion Center (AIC) to have my port accessed.

12:30 PM Walk over to nuclear medicine department, have dye injected, walk back to AIC.

1:15 PM Get zometa (takes about an hour). Have port de-accessed. Hopefully I will get lunch in here somewhere.

2:30 PM Walk back over to nuclear medicine for bone scan. Cover eyes with eye mask and listen to iPod while on scanner bed.

3:30 PM Head home, crash.

Sounds lovely, doesn't it? Almost a whole day spent in medical procedures. Thank goodness I have a good book to read, an iPod to listen to favorite music, and patience. That last is the most important of all.

I get the bone scan results next week and promise to post the news as soon as I get hard information.

Mujadderah recipe

Peel and thinly slice 6 onions.

Saute onions in a large skillet over very low heat in a little olive oil until onions reduce in size and caramelize (turn brown and sweet). This takes a long time, more than an hour, so be prepared.

Combine one cup brown rice with 1 1/2 cups water and 1/2 teaspoon salt in a saucepan. Bring to a boil, reduce heat to a simmer and cover. Cook about one hour until done.

Combine one cup lentils in water to cover, bring to a boil. Reduce heat and simmer covered until done (about 30 minutes). Salt to taste after lentils are cooked.

Combine rice and lentils. Top with caramelized onions and serve. Pass sour cream or thick Greek-style yogurt as a topping.

Delicious!

The Julia Child meal

Last night we hosted the friends who gave me a copy of Julia Child's Mastering the Art of French Cooking (both volumes). In their honor, I served an (almost) entirely Julia meal:



Challah they brought from Seattle's Macrina Bakery
Potage Parmentier (potato-leek soup)
Epinards a la Mornay, gratines (creamed spinach with cheese sauce)
Chou-fleur roti a la gratine (roasted cauliflower with buttered breadcrumbs)
Mujadderah (Lentils and rice with caramelized onions and sour cream is the not-Julia dish, but I love it and this is the time of year to serve it. It's what Jacob served to Esau when E was so hungry he gave away his birthright for some pottage.)
Plenty of wine for me and grape juice for our friends
And for dessert, Les Croquets Denison (little walnut-almond cakes with French vanilla ice cream)

It was a delicious meal if I say so myself. Everyone had two helpings of cauliflower and spinach!

And I love serving Shabbat dinner the day after thanksgiving that doesn't even come close to reminding us of turkey leftovers.

Thanksgiving rituals

Ever since I was a little girl, I have watched the Macy's Thanksgiving parade on television. The Radio City Music Hall Rockettes are my favorite part. I wanted to be a Rockette, but the minimum height is 5'7", and I never got taller than 5'5". Watching them do precision high kicks every year may be the reason I love dance.

It took me a few years to convince Rik that this was a ritual worth continuing. Even if he ignores me, I follow the Cohen family custom of shouting for company when the Broadway shows come on, the Rockettes, a particularly good marching band, or a favorite balloon (I loved Underdog as a kid).

These days the Broadway shows and the Rockettes are on at the beginning of the parade, so I can watch for an hour and then start the cooking.

Ah, cooking. It's just not the same when we go to Thanksgiving dinner at someone else's house, even if I bring something yummy. Every so often there is a year we do not host, so I have developed a new ritual: I cook some turkey parts at home so that the house smells like roast turkey and we have leftovers for the next day.

Yesterday I baked chef Kevin Davis' Theo chocolate pecan pie. I made it last year from a recipe printed in the newspaper and learned that the cooking times had been printed incorrectly. After the holiday, I called the paper, they called the chef, and he solved the mystery. It's a most unusual pie, baked in a springform pan with tall sides and uses a full pound of butter in the crust. But you only have one piece....

Today, after watching the Rockettes, I will bake an apple pie, roast the turkey drumsticks, and my Thanksgiving rituals will be complete. Then it's off to the most important part -- being with friends who are like family.

Maybe someday I will achieve a lifelong dream of being in the crowd in New York City on Thanksgiving Day and seeing the Rockettes in person.

Quick questions

How effective is my medication? Can I miss a dose?

The Megace is doled out to me in 100 mg/ml liquid form, in small bottles. It can be hard to predict how long the last few doses will last. So when it looks like I have only some drops left, I call for a refill or in yesterday's case, a new prescription.

The first time I did this, the pharmacy told me they don't normally stock this medication and it would take a day or so to order it from another location. Now that I have been on it for a few months, I guess they are stocking it. I called the doctor's office and they said they would call in a new scrip for me.

I just called the pharmacy and my medication is ready to be picked up.

Yay that I don't have to miss a day's dose.

Boo that I had to call the nurse twice to remind her to call in the scrip.

Yay that this pharmacy learned to keep a new medication on hand now that they have a regular client taking it.

Yay that I don't have to miss a dose and learn the hard way if it would have an adverse effect.

No more mammograms for women age 40?

It's been all over the news, the recent recommendation that women between the ages of 40 and 50 no longer need to have a mammogram, and women over 50 can have one every other year instead of every year. Plus there is now a recommendation that women no longer need to perform monthly breast self-exams (BSE). It's too stressful.

Oy.

I had a baseline mammogram at age 35 just in case (on my doctor's recommendation). At age 39 I found a tumor through BSE. It was confirmed by mammography and needle biopsy to be malignant and I entered the world of breast cancer.

Was I nervous about the baseline mammo? Yes. And about the tumor I could feel, about the follow up mammogram, the needle biopsy, and the three-day wait for results.

Was I glad to have had the testing anyway? You bet! Because I wasn't even old enough at 39 to begin having mammograms. But I got cancer anyway.

Several of my younger friends who were diagnosed with breast cancer had difficulty getting their doctors to believe that they had found a lump, or a suspicious rash, and needed follow up diagnosis and care. Many of them are now dead, because breast cancer in younger women can be more aggressive than in older women.

So here are my feelings about these recommendations:

1. I hope that the insurance companies don't view this as a reason to no longer fund mammography in women who fall outside the age criteria.

2. I still recommend to my mother, my sister and my friends that they have annual mammograms. Because mammography catches breast cancer earlier, when it is more easily treatable.

3. Let's not allow this to keep our country from health care reform either.

4. For anyone who doesn't know what to do, I say: Talk to your doctor. Ask her what she recommends. Discuss the new guidelines in detail with him. And make a health care decision based on your medical needs, not the potential stress that other women might feel.

It could keep you alive.

Rainy Seattle days

It's a typical Seattle November -- cool if not outright cold, rainy, grey, overcast, windy. It's hard to go outdoors when the weather is so miserable, so I have been trying to focus on in-home tasks since my family left on Monday. (Of course, the fact that I was a little pooped from the birthday party and everyone's visit may have something to do with not wanting to run around!)

I have gone through all the party photos, ordered prints from Costco, rearranged the scrapbook. Stacked up the ironing but haven't actually done it yet -- maybe later today. Swept the leaves and outdoor yuck from the floors. (I swear, the dogs bring in more every day.) Did a load of dishes and laundry.

I have a good book to cuddle up with, but I also have a meeting to attend later this morning. At least by the time I get to the book the dogs will have dried off from their morning walk (Pumpkin got soaked). It's much more pleasant to cuddle with dry dogs than wet, stinky ones.

And that's my plan for today. The best part about living with cancer can be the freedom to do nothing if it so moves me.

Happy birthday to me! (part two)

The second part of the big 50th birthday celebration was an (adults only) birthday party. A catered dinner, a special cocktail, the closest of friends and family all combined to make for a memorable evening.

Rik greeted everyone at the door and offered a glass of something festive - beer, wine, sparkling water or a special pomegranate martini. The caterers passed hot onion tartlets and olive tapenade on baguettes. A. handed me a tiara to wear, complete with sparkly purple rhinestones. People had the opportunity to write a favorite lyric from a musical into a special scrapbook to which I will add photos from the party.

We enjoyed a fabulous dinner catered by the Madison Park Cafe:
Spinach salad with goat cheese and pears
Marinated salmon on skewers
Green beans
Farro with sauteed vegetables
Sliced baguette and butter

Music by Balkanarama set the mood for a festive evening.

I think the highlight of the program was the singing of Ladarke with friends from Balkanarama, Radost and Dunava. What a rush! We haven't sung it together in years. And the kazoos were a nice substitute for a tamburitsa orchestra.

Of course, another highlight was the video slide show Rik created. And the toasts by my mother, sister and husband. And the roasting from dear friends C and D. Who could choose?

Dessert was prepared by good friends and featured lots of vitamin CH (chocolate).

We ended the evening with more dancing, carrying on and happy talk. All in all it was the perfect birthday party, just the way I imagined it, down to the last detail.

Happy birthday to me! (part one)

As part of the great 50th birthday celebration, I asked for an aliyah, to be called to the Torah at Shabbat morning services. The rabbi made a special blessing for my continued good health and leadership to our synagogue community. Later on I led the congregation in the musaf service. It was so wonderful to have my mother, sister and brother in law, and Rik's parents there to celebrate with us. I felt sneakily good about saving a whole row of seats and then being able to say, "My whole family is coming."

After shul we all came back to the house for coffee and cake and a chance to shmooze a bit. Once everyone had left I tried to nap but it just didn't happen. I must be so keyed up that my family is here that I simply couldn't sleep!

For dinner we went to Rover's, a wonderful French restaurant that I have wanted to try for years. When he was at Washington MIddle School, Rik taught the children of "the chef in the hat," Thierry Ratureau. We were greeted warmly by the staff and offered champagne, compliments of the chef and his wife. It was a lovely start to a perfectly exquisite meal. (And clearly it paid to mention the WMS connection when making the reservation!)

Here is what we ate, a special tasting menu in honor of Julia Child:

Amuse Bouche of fennel soup, sardines with harissa and fromage de tete (which is not cheese but made from meat pieces from the head of a calf, in aspic and seasoned carefully. I ate it but neglected to ask what animal it came from. It was delicious.)
Salade Lyonnaise with frisee lettuce, poached egg, bacon, garlic crouton and red wine vinaigrette (I asked for mine to be served without the bacon.)
Soupe a l'Oignon with baguette and comte cheese
Boeuf Bourguignon (beef stew) with red wine, pearl onion, carrot and mushroom
Souffle au Chocolate served with rum creme anglaise

It was a wonderfully decadent meal, served professionally and spiced with lively conversation. We were seated in a private area and felt that we had the undivided attention of the staff. I can heartily recommend Rover's for your next special occasion.

Friday haiku

A Facebook friend challenged me to write a Friday haiku. Here is mine:

Birthday coming up
Celebrate with ev'ryone
It's the big 5 - 0

Birthday musings

In a few days I am going to turn 50 years old. After my mets diagnosis, this is an age I wasn't sure I would I would see, much less get to celebrate with family and friends.

Originally after my mets diagnosis I just wanted to outlive the predictions, which said half the women diagnosed with mets lived one year. That was seven years ago, and I confess I am glad to have outlived the prediction from that time and no longer even want to know what the current data suggest. Every day after that first year has been a gift. That's why I celebrate my "metsiversary" every year.

It also was never a goal of mine to reach the age of 50. I did have goals at first: to dance at my niece's bat mitzvah; to travel to places old and new in other parts of the world; to buy a house and make it a home. (I also had a goal to raise children, but the cancer prevented that from happening.) I am glad to have achieved all of these goals. I am glad to have been well enough to achieve all of them. And I am even happier that I continue to feel well enough to set new goals.

For now, it's enough to spend time with family and enjoy the celebration. I am going to be 50, despite the cancer I have no grey hair, and I look and feel pretty terrific. As we say on Passover -- dayenu -- it will be enough.

Thought for the day

To quote a friend from my online support group:

Choose to be happy.

What else is there to say?

Update from the oncologist

Yesterday I had my monthly appointment with Dr. G. He still says it's time to change therapies as my tumor marker CA 27.29 continues to rise. But the newish breast tumors have shrunk slightly and I am not symptomatic of anything else. So we are planning a bone scan to see if there is any other cancer activity in my body.

I managed to persuade him to consider trying Femara (letrozole) again, the first estrogen inhibitor I used, which I took for three years with good results. In the meanwhile he will do some more research on Avastin (bevacizumab). We both agree that we should put off chemo as long as possible, given my body's hyper-sensitive reactions last spring to the 5FU.

Until next month's visit, I stay on the Megace.

Some lymphedema improvement

My hand continues to improve somewhat. I have been sleeping without bandaging for about a week. Today I have been able to be without the glove until now, about 3 PM. I also saw the oncologist hits morning and he asked about the lymphedema. He thinks that the improvement in the lymphedema is my cancer not being as active. Huh.

I called the compression garment provider, Mary Catherine's and Daughters, to see if they had a second over-the-counter glove for me. (In May, they forgot to tell me the second glove had arrived and the owner brought it to me while I was in the hospital.) It turns out that they only order a certain number of garments in any given week, and so my sleeves and second glove will likely not arrive until the end of the week of Thanksgiving. I don't know why they have this policy, especially since my insurance company has already authorized payment for the garments. So I have another few weeks to wear the old sleeves and hope they are giving me enough compression. At least they told me they have already ordered the garments. Granted, the sleeves are custom made in Germany, so I knew it would take a few weeks, but the glove? It's an OTC item.

If I hadn't already given them my business, I might be tempted to go to another provider. But at this point it would be more effort to cancel the authorization request and get a new one for a different provider. But I am not impressed with this kind of customer service.

Lymphedema back and forth

I think my hand may be beginning to improve. If you remember, I slept without the bandaging one night last week(?) and then felt I hadn't gotten enough support without the wrapping. Last night after a long day and a hard choir rehearsal, I felt I needed to get some fresh air on my skin so decided not to bandage before bed. This morning my hand seems okay. I am actually not wearing the glove yet and it's already 11 AM.

Could this be an indicator that things are beginning to return to normal? If I can alternate sleeping bandaged and unwrapped, if I don't have to wear the glove all day long but only most or even part of the day, if the new sleeves arrive quickly, maybe my hand and arm will be on the way to normal. The old normal, not a new normal, I hope.

Of course, every time I sleep unwrapped I don't take any ativan and then I get a little rebound insomnia, but what can you do? It's still more comfortable to lie awake in bed unwrapped than to bandage and try to sleep uncomfortably on drugs.

Enjoying the sun

We've had a couple of sunny days in Seattle lately. The mornings at least are bright and I love walking the dogs to get my daily dose of (external) vitamin D. Sadly I then focus on household stuff, errands etc. and haven't taken advantage of the less wet grass to continue to put the garden to bed. The strawberries still need to be weeded and mulched, the front beds are weedy and two of the raised beds could use a tarp cover since I didn't plant a cover crop in them.

On the plus side, Rik has been really good about yard work. He rescued the rest of the green tomatoes, which we hung over the kitchen window and are slowly ripening in the indoors heat. Not as tasty as summer-ripened fruit but a definite improvement over what's in the grocery stores now. I just don't eat tomatoes in the winter. Store tomatoes taste like cardboard.

The local farmers' market has closed for the season and I missed the last few Thursday shopping sessions. It's back to apples, pears and bananas for fruit and on to eating squash, greens and potatoes for veggies. The dogs love the canned pumpkin I've added to their diet to add bulk while they lose weight. They think the canned green beans are okay, but they LOVE the canned pumpkin. Did you know canned pumpkin is a seasonal item? I will have to stock my pantry up.

I must be in the mood to cook....

I spoke too soon

My arm felt uncomfortable in the sleeve by late afternoon yesterday, so I am afraid I spoke too soon about no longer bandaging. I wrapped my arm again last night, perhaps a little too tight since I was worried about the after-effects of the night before. Things seem more normal today (at least, "normal" for the past eight weeks).

Wrapping too tight happens infrequently but when it does - ow! Fabric rubs against skin and leaves red marks (dangerous when you have lymphedema, can cause infection if they open). The finger wraps on my fourth finger were too tight last night and I felt as though the circulation was being cut off in my hand because of it.

I will adjust as I return to wrapping every night until I get the special, made-to-order new sleeves in a few weeks. And even taking ativan again didn't help me get better sleep with the bandaging too snug for comfort.

There must be a happy medium. I just have to find it.

Loving our Pumpkin

This was in today's funnies:



We love our Pumpkin (and his Bob too)!

A night without bandaging

I gave myself a night without bandaging last night. My arm was stable when measured for a new sleeve last week, and I thought it was time to get off the ativan as well. As an anti-anxiety and sleep aid it's great, but when you take it every night for eight weeks, it becomes habituating.

After eight weeks of this craziness, I am so tired of sweating into the glove, feeling like my skin didn't breathe, and not being able to relax my hand.

I had the usual rebound insomnia after stopping the ativan and tossed and turned every hour all night long. I guess I got about three hours' sleep all together, and I predict a nap will be in my future this afternoon.

But this morning my arm seemed fine. Time will tell whether that is really the case and if I need to wrap again. I hope not, but you never know. One night without bandaging might set everything back again. However, I think it was a risk worth taking.

Serendipity

Yesterday the stars were aligned for my errands. I decided to go downtown to get my driver's license renewed, after trying unsuccessfully to renew online and via the US Postal Service. The timing on this was important, since I also had to be at the hospital to get my zometa by 1 PM.

First karmic alignment: I found a parking space literally in front of the entrance to the DOL building at 1000 2nd Avenue. No matter that the entrance to the DOL office was around the corner. At least I didn't have to walk blocks in the rain.

Second karmic alignment: It stopped raining just as I pulled into the parking space.

Third karmic alignment: The reason I couldn't renew online or through the mail was because I literally needed a new license. The other types of renewals are for the sticker you place on your current license. And the photo they took wasn't so bad.

Fourth karmic alignment: I walked the two blocks to the doctor's office to try to get a flu shot since I had such a primo parking space.

Fifth karmic alignment: The doctor's office was having a flu clinic and they could take me right away even though I hadn't made an appointment.

Sixth karmic alignment: Arrived early at the hospital for zometa and was told to get some lunch, the nurses were too busy to take me early. Okay, maybe eating hospital cafeteria food isn't exactly serendipitous, but at least it's cheap.

Seventh karmic alignment: No one ticketed my car parked by the hospital even though I had technically been parked more than two hours.

Came home after zometa, took a nap (sleeping on the left side since I'd had the flu shot in the right arm), made mushroom soup for dinner and didn't have an evening meeting. Now that's my kind of day!

Final (for now) lymphedema treatment

The PT and I agree that since the manual lymphatic drainage massage doesn't appear to be working, it's time to stop wasting money and time on it. I went straight form PT to order new sleeves and gloves and the provider gave me a new glove yesterday from stock on hand. The new sleeves are made to measure in Germany and take a couple of weeks to arrive. When they get here, I will stop bandaging at night, wean myself off the ativan, wear the new garments and hope for stability.

The good news is that the sleeve provider measured my arm yesterday and each measurement was the same as in April, the last time I had sleeves made. So hopefully the extra puffiness in my hand may resolve on its own, just like it did the last time, and I will be back to my usual daily lymphedema dealings.

One can always hope.

Last authorized physical therapy

Today is the last authorized day of physical therapy for my lymphedema flare up. I know I could get more visits approved, but if the PT thinks it's not helping, she won't recommend more treatment.

I am worried that I won't be able to manage this flare up without professional help and don't know what I'll do if I have to. Yes, I will be measured for a new sleeve and glove. That's the next step at this point. My six month old sleeve and glove are too worn out to be effective any more.

But if the bandaging isn't helping at night, and the sleeve and glove aren't providing enough compression during the day, what's left?

I guess I will find out in a few hours. In the meantime, stress.

Lymphedema update

It's now officially seven weeks since I began dealing with this lymphedema flare up. The physical therapist measured my arm today and there is no real change. I have had nine rounds of PT so as you can imagine, I am distressed. She gave me some new bandaging material to try over the weekend. I have one more approved visit next week and then, if things remain the same, the PT will recommend that I not continue therapy at this time but get fitted for a new sleeve and glove. If, on the other hand, things change over the weekend and there is measurable improvement in my hand and arm, the PT will request authorization for additional visits and continue to treat me.

Dealing with lymphedema is endlessly frustrating. Evidently, although many people respond quickly to the manual lymphatic drainage, massage and bandaging (the gold standard of treatment for lymphedema), there are a stubborn few who have fall into the cracks and don't get immediate relief. That's my lymphedema -- Trouble with a capital T.

The best ST:TNG episode EVER!

I have been staying up past eleven o'clock every night to check out the first five minutes of the Star Trek: The Next Generation episode on reruns. Last night, despite my fatigue, my all-time favorite episode aired and I had to stay up to watch the whole thing.

"First Contact" remains the episode I most associate with the genius of Star Trek. Commander Riker is part of a first contact team studying a civilization on the verge of breaking out into the galaxy in order to offer them a chance to join the federation. He is injured and at a medical facility -- surprise -- is revealed to be an alien.

The planet's population appears to be split about the rapid technological and social changes they are undergoing. (Sound familiar?) The planetary head of government wants to move forward with space exploration, as does the science minister. The minister of security worries that the people can't handle so much new at once. Riker's injuries and Captain Picard's appearance to the planetary government combine to shake things up too much. The minister of security tries to make it appear that Riker shot him. His supposed martyrdom is intended to maintain the status quo and send the aliens away.

The real importance of this episode for me is the role the science minister plays. She tells part of her backstory:
Mirasta Yale: [visiting the Enterprise] When I was a child, my parents would take me to the planetarium. And we would sit in the dark. And it was as if I was on a spaceship, on my way to another world - to meet people on other planets. Part of me is waiting for the lights to come up, and the program to end.

And at the end of the episode, after learning that her proposed study of warp drive will have to be slowed down, and that the Enterprise will leave, perhaps only to return after many years, she asks to stay on the Enterprise and leave her planet.
Mirasta Yale: Take me with you!
Captain Jean-Luc Picard: I have to believe that you cannot be fully prepared for the realities of space travel.
Mirasta Yale: I have been prepared for the realities of space travel since I was nine years old and sitting in a planetarium!

That was Roddenberry's genius -- to articulate the human desire to explore and discover. I thrilled to Mirasta Yale's character's line "Take me with you!" the first time I heard it in 1991. Hearing it again last night was no less soul-stirring. I too want to be part of Star Trek's advanced civilization. And by the year 2367, they surely have discovered a cure for cancer!

More pink ribbon crap

Unbelievable! I just got an email from Young Survival Coalition in which they provide good info about breast cancer but then proceed to hawk more pink ribbon crap. And they don't disclose how much money YSC gets from each purchase.

Do me a favor -- DON"T go to their boutique and shop. Feel free to make a donation, it's a worthy cause; but please don't participate in the "Pinktobering" of breast cancer.

YSC's Breast Cancer Awareness Month Boutique

We are pleased to announce the partnerships Young Survival Coalition has formed with numerous retailers in honor of Breast Cancer Awareness Month 2009. The support and generosity of our corporate partners will help raise vital awareness about young women and breast cancer as well as the much needed funding to ensure that young women affected by the disease can access the resources, programs and peer support they need.

We are grateful to our retail partners for sharing the same passion and dedication to our mission that the YSC Board, staff and thousands of volunteers do, and we hope you will show your support by doing your holiday shopping early.

Please visit our online Boutique for a complete listing of all the exciting products available this year as well as purchasing information.


Mikimoto Everything Is Possible with Hope Bracelet


Afterglow Organic Lip Love in Muse


Breast Cancer Awareness Edition Oakley Ravishing


Lauren Merkin Breast Cancer Awareness Wallet

Note: In our Boutique, ongoing partnerships are marked with an asterisk; purchases made throughout the year will benefit YSC.


YSC's Pink Vespa Sweepstakes

Become a fan of YSC on Facebook and register for a chance to drive away on this limited edition pink Vespa LX 50! Already a fan of YSC? You're still eligable to enter, just vist our fan page for more details. Help us reach 10,000 fans, and spread the word that young women can and do get breast cancer.

Hooked on "Star Trek: The Next Generation" -- AGAIN

I was channel surfing one night last week and came across reruns of Star Trek: The Next Generation (now to be known as TNG). The first episode I saw was when when the Borg captured Captain Picard. Well, I remembered that was a good one, so I stayed up until midnight watching. The next night was the post-Borg episode when Picard goes back to his home village on earth and has one of the best Star Trek endings ever, proving that Gene Roddenberry was truly a genius.

It ends with Picard back on board the Enterprise, and all's right with the world. His star-crazed young nephew sits outdoors looking up at a starry sky, dreaming about when he will be a starship captain. That image wrung my heart.

I always wanted to travel in space. Good lord, I've been reading science fiction since I was 11 years old! Now that I am turning fifty next month, and living with metastatic cancer, it seems highly unlikely that my dream will ever come true. Still, many other girls and boys were inspired by reading science fiction and watching Star Trek and took up careers that may some day bring humanity to the stars.

So now I am hooked on TNG again and stay up too late at night watching bad 80's hair styles and some pretty stiff acting. But I still want to go aboard the Enterprise one day "to explore strange new worlds, to seek out new life and new civilizations, to boldly go where no one has gone before..."

Not so much pink

I haven't seen so much pink this October. Maybe the concept of cause marketing is slowing down, or maybe there really is less breast cancer pink ribbon crap out there. Or maybe I just am not noticing it....

Dunava in concert

Dunava is very happy to hold our first-ever concert with the Seattle Folklore Society! We will be singing Saturday, November 7, at 7:30 p.m. in the Phinney Neighborhood Center (Brick Building), in Seattle. And rather than try myself to persuade you to attend, here is what the SFS Web site (http://www.seafolklore.org/folksche.html) says about us:

"Perhaps you tried to catch them at the Balkan Showcase during Folklife but got shut out of that phenomenal standing-room-only show? Well...fret not! Thankfully, you have another chance! ... Dunava is a local treasure carrying forward these "old country" musical traditions right here at home with a rare mixture of carefully studied authenticity and spirited interpretation. They have also just released their first studio recording, after much popular demand at their live shows. Please come out to welcome Dunava in their debut Seattle Folklore Society performance. These ladies will knock your socks off!"

There you have it! We'll be in sock-off-knocking form.

Tickets are $14 and are available online. SFS members receive a discount, and kids and seniors are half-price.

The Phinney Neighborhood Center is at 6532 Phinney Avenue N, Seattle, WA 98103. Concerts are held in the Community Hall (brick building). Free parking in the lower parking lot at the Center. Enter the lot on N 67th, between Phinney and Dayton Ave. Phinney Center has disability parking outside the door on the Dayton Street side of the building and flat access into the hall from Dayton. Parking on Dayton Ave is available for disabled and musician load/unload only.

We look forward to seeing you there!

Attitude adjustment

Yesterday I saw the PT for the first time in more than a week. She confirmed for me that my hand and arm were no worse - but not especially better - after bandaging 20+ hours a day for five days in a row. So she gave me permission to not do this. What a concept! As she said, if it's not helping, and it's making you suffer, why do it?

I am back to wearing the sleeve and glove during the day and bandaging at night. This morning my hand feels a bit swollen but my arm seems improved. The PT will check my wrappings to see if I need to purchase new ones in case the stretch has given out. Sadly, these bandages are not "durable medical equipment" because they wear out after several weeks/months of use. If they were considered DME, my health insurance would cover the expense. As it is, I have to pay up front every time I need new supplies. Thankfully the undersleeves and finger bandages have a much longer life span and are washable.

J, the PT, rearranged her schedule to find me some additional appointments so I will now see her at least twice a week for a few weeks. I really think it was going for a week without treatment that put me over the edge. But she is the only PT with manual lymphatic drainage skills at this practice, I like her, and her schedule fills up quickly.

This is why it takes me so many weeks, even months, to wrestle down a flare up. First I have to identify the problem. Then I try to address it on my own, hoping it will resolve simply. That takes a week. Then by the time I realize that I need PT, I have to get an appointment AND try to get adequate follow up (i.e., twice or more a week for several weeks). That can prove impossible, as we saw last week when J had nothing available.

I will see her again, get her opinion on buying new supplies, and go back again next week.

More coping through sleeping

Yesterday I wrapped my arm after breakfast and dragged my sorry ass around doing errands -- groceries, library, gas station, meeting. By the time I got home I was wiped AND frustrated, so again went to bed at 5 PM. I really feel for Rik through all this. My coping strategy can't be good in the long run for our marriage but in the meantime sleep and anti-anxiety drugs seem to be the only things holding me together. Vitamin CH isn't even helping.

Now it's so early that dawn hasn't even cracked. I have to get myself ready to head off to see the physical therapist (YAY! about time!), but that entails washing me, feeding me, feeding and walking two dogs -- in the dark and pouring rain.

The PT wants to see my bandaging supplies. If she makes me actually bandage I may scream.

Late night thoughts

Saturday: bandaged for 22 hours (10 AM - 8 AM the next day)
Time sleeping: 18 hours (2 PM - 8 AM)

Sunday: bandaged for 22 hours (10 AM - 8 AM)
Time sleeping: 16 hours (2 PM - 6 PM; 8 PM - 8 AM)

Monday: bandaged for 15 hours (5 PM - 8 AM)
Time sleeping: 14 hours (5 PM - 10 PM; 11 PM - 8 AM) (I hope)

I'm not sure how well sleep as a coping mechanism is working. I can only spend so many hours lying down. But the sleeve and glove are not giving me enough relief. By 4 PM today I was desperate to remove them and bandage, even if it meant getting into bed right away.

I never see Rik, since he gets up at 6 and by the time he gets home I am bandaged and on my way to bed. Can't read a book (can't hold it in only my right hand and turn pages). Hunt and peck typing only when desperate to get caught up on email. Can't cook (afraid to hold a sharp knife in my right hand and can't manipulate one in my bandaged left hand). Can't order in every day either. So I'm not eating dinner (no great loss here, it can't hurt to lose a few pounds, but Rik is eating spaghetti every day). The only ones who are enjoying this are the dogs. They love to cuddle in bed.

My stress and anxiety are sky-high and even ativan isn't giving me enough relief anymore. I see the PT on Wednesday morning and hopefully after I unload all this on her, she will have some ideas. Meanwhile I am making myself and everyone around me crazy.

If I thought cancer was bad, lymphedema is a CURSE.

Metastatic Breast Cancer - No Pretty Pink Ribbon

By Ellen Moskowitz - President, Metastatic Breast Cancer Foundation

Oct 7, 2009 - 10:23:33 AM

(HealthNewsDigest.com) - It’s October. The pink ribbons are out. Survivors flock to tell their success stories. We hear how they fought hard and won the battle and can now move on and get back to their life - usually as a ‘better person’ for the experience. We all applaud. It feels good. There is closure and we all love closure. But what about the 30% of those with breast cancer whose cancer has spread beyond the breast to the bone or a vital organ ( usually the lungs, liver, brain)? That 30% is the metastatic population.

Everyone knows someone who had surgery, chemo, radiation and then struggled with their fears and finally got their life back on track. Everyone knows someone who died of metastatic breast cancer. What people don’t know is that, in the United States, there are 155,000 of us currently living with metastatic breast cancer.

CANCER IS A GROWTH – NOT A GROWTH EXPERIENCE

Those of us living with metastatic breast cancer don’t have a story that can be tied up with a pretty pink ribbon. We don’t ever get to move on and get back to our life. Cancer treatment IS our life.

There is no cure for us BUT there are treatments – and we stay on treatments forever. And that is a good thing. The bad news is that the cancer cells learn how to outsmart the treatment drug, and then the treatment fails us and we need to go on to the next treatment – always living with the fear of running out of treatments. It’s the feeling of being in an eternal race.

We don’t fit in with all the cheering about ‘beating the disease’. We have to learn how to live with the ever-present anxiety of knowing it is a matter of time till the present treatment stops working. We are left trying to explain to friends and family why we are still on chemo. The world likes closure and we have no closure. Our treatments go on and on and on - we hope for a very long time.

METASTATIC BREAST CANCER AWARENESS DAY

Back in 2007, several of us living with metastatic disease were sitting around Nina’s dining room table, struggling for ideas. What could the Metastatic Breast Cancer Network (MBCN) do to help bring this disease out of the shadows? We realized that if we were to ever impact funding and research to extend to those whose cancer has already spread, we would have to bring awareness to this disease and get us out of the shadows.

It was Amy who suggested a proclamation declaring a special day in October for metastatic breast cancer. She contacted Mayor Bloomberg’s office in NYC and we got the proclamation! Feeling thrilled, we sent out a copy of the proclamation to all 250 members of MBCN. Next thing we knew, Meg in Princeton, NJ got a proclamation, as did Living Beyond Breast Cancer (lbbc) in Philadelphia, along with a proclamation from Buffalo Grove, Illinois.

In the spring of 2008, a member in Maine wrote to MBCN announcing she got a proclamation from the Governor of her state. Our awareness campaign kicked into action! We email blasted our then 900 members requesting they contact their mayors and governors to get proclamations for Metastatic Awareness Day. To our amazement, within 48 hours, we had over 150 responses!

We heard from members across the country, and they sent the email on to their friends, and we heard from them too. And we heard from women across the various oceans.

WE HAD HIT A CHORD

Some of the responses we received included....

I want to shout. Many of us are living isolated, with great sadness that we may not be around for long. I will fight this disease with humor and positive thinking, but sometimes that goes so far.

Thank you for your efforts to make all of us with stage 4 BC heard. This is a difficult kind of struggle for as long as we are going to be able to exist.

We need to let everyone know that we want to be taken seriously, not just people waiting to die--but people fighting every minute to live.

When breast cancer is discussed on TV, we never hear the word metastatic. Let's show the metastatic face--stand up ladies, for you are fighting the battle in ways that give the word COURAGE a new meaning.

I've been living with metastatic breast cancer for nearly 5 years--and people DO NOT UNDERSTAND the never-ending nature of this disease.

Thank you for helping us come out of the shadows and into the light.

I have felt very lonely and different from all my breast cancer friends. I am in a different category. People say I am so glad you are cured and it’s uncomfortable and hard for them to get my situation.

My mother passed away from metastatic breast cancer and this is the first time I've seen in words described how she felt exactly. I will speak out for her.

AWARENESS OF THIS MISUNDERSTOOD DISEASE

Today MBCN has 1400 members. As I type this, proclamations are coming in from mayors and governors across the country. Last July, MBCN spearheaded National Metastatic Awareness Day by sending a group of patients with metastatic disease to Washington.

Awareness is growing. Our faces are being seen. Our voices are being heard.

We need this disease to be understood by the breast cancer community, the medical community and the public at large. We need to bring attention to our cause so that research will focus on the process of metastasis in order to develop more and better targeted treatments to extend life and make metastatic breast cancer a truly chronic disease.

For more information on Metatsatic Breast Cancer Awareness Day, visit Metastic Breast Cancer Network.

Just finished 22 hours bandaged

I wrapped my arm around 10 AM yesterday and stayed wrapped until just a few moments ago at 8 AM Sunday morning. There does seem to be some improvement, but not enough in my hand. My, did I suffer yesterday!

i went to synagogue bandaged and answered many annoying questions from well-meaning people who wanted to know if I was all right. I came home from shul and took my usual Shabbat nap. Had a snack, let the dogs out, and then decided I was too frustrated to go on.

I took some ativan and tried to continue reading my book. No impact -- I was still stressed and anxious even with 0.5 mg ativan on board. So at 6 PM I decided to get into bed and go to sleep. This is a pretty typical coping mechanism when I feel like life has given me more than I can handle.

I changed into pajamas, took some more ativan, and got into bed. I think I heard Rik come to bed around 11 PM. Some time in the middle of the night I had to use the bathroom, then took more ativan to get back to sleep. Woke up again around 4 with back ache, so took some vicodin to help relax. At 6 both dogs decided they had to go outside, so I got out of bed with them. Took another ativan to try to get back to sleep yet again. And at 7:50 AM I decided I'd had enough.

Since I don't have anything planned for today, I will try to bandage again for 20-22 hours. Unfortunately, this makes me incredibly cranky, anxious and tough to be around. Never mind that I won't be able to take down the sukkah, type, write, cook a meal, etc.

And if I need to do so again, I will go to bed at 6 PM to avoid taking out my bad mood on Rik.

Report from the oncologist

I saw Dr. Goldberg (Seattle's best oncologist) yesterday for my monthly checkup. Although my tumor markers continued to climb in the past four weeks, the few points' difference were not statistically significant. That may mean the increased Megace dose is having a greater effect on my cancer. The tumor in my right breast feels smaller to the touch and so I will have another ultrasound to determine if it is indeed shrinking. (Remember, we are treating me systemically through drugs that will hopefully make an impact on all my metastases as well as the new tumors. That's why I did not have surgery to remove the new tumors.)

Dr. G may want me to change treatment. We looked into the dasatinib trial again and he mentioned starting Avastin (bevacizumab). Then he got on the phone with Dr. Hannah Linden, another oncologist specializing in breast cancer whose opinion he respects. She said the dasatinib trial had ended because the drug was not found to be effective. She thinks highly of the recent high- vs. low-dose estrogen trial, which Dr. G is not sure is safe. And she would not recommend Avastin as a good way for him to go in my case. Dr. Linden did mention that there would be a new trial of a histone deacetylase inhibitor starting a few months. Perhaps that would be of help to me.

This is why they call it practicing the art of medicine -- they're practicing on me. It's almost more of an art than a science....

One month (plus) of lymphedema flare up

This lymphedema flare up seems particularly stubborn. Or maybe I just don't remember from last time. After 32 days, there is a lot of fluid in my hand, wrist and forearm, so much so that even without a glove or bandaging I am having trouble gripping things with my left hand.

This week I was unable to schedule an appointment with my PT, so I am back to bandaging as much as possible. That meant being wrapped from 8 AM yesterday to 7 AM today. I didn't see much change or improvement and can't be without the use of my hand for multiple days in a row. Today I am wearing the sleeve and glove in hopes of being able to accomplish some tasks. I will bandage again after dinner and stay that way overnight, then spend Thursday wrapped for another 20-22 hours. (Thursday is good since I don't have anything planned).

Of course, this back and forth with bandaging means I tend to overdo on the days I wear the sleeve and glove to make up for the fact that I am so limited in fine motor control when bandaged. That means today's tasks include ironing, maybe some garden work if the sun holds out, and being able to cook dinner.

Last night I was so frustrated after spending the entire day bandaged that we had to go out for dinner. It was yummy Thai food, but still! My frustration level grows by leaps and bounds with every additional day of dealing with this lymphedema flare up.

Sick of pink

From THE BOSTON GLOBE SUNDAY MAGAZINE - THE HEALTH ISSUE

Sick of pink

This month, like every October, a sea of pink ribbons washes over products from sneakers to snacks. While the effort raises research dollars, it leaves some breast cancer survivors feeling that companies are profiting from their pain.

Click here to read the full article.

Back to bandaging

After three visits to the physical therapist, it is clear that her suggestion to leave my arm bare at night for a few nights and do the self-massage twice a day did not result in any improvement. In fact, my hand and forearm are slightly larger than when she measured me on the first visit. Not statistically significant, but enough information to warrant going back to bandaging again.

I had a few nights of normal sleep but yesterday wrapped my arm around 6 PM and stayed wrapped all night until 8 this morning. Since my choir has a performance today, I'll do the same this afternoon. I will look for a day when I have no activities planned so that I can bandage first thing in the morning after my shower and stay that way until the next morning. Bandaging is most effective when done 20-22 hours per day, but given how extremely left-handed I am , it's very tough for me to find a day when I don't need to write, type, cook, drive or do anything requiring fine motor control with my dominant hand.

I am back on the ativan as a sleep aid at night because of the bandaging. It's funny: I sleep soundly, but don't remember my dreams, and hardly move. So I wake up with a sore shoulder from not having turned over even once in the night. I am sure after a couple more nights on it I will become used to the ativan again and it will give me sleep more like what I'm used to -- a little twisting and turning, trying to roll over, waking at night from a hot flash, etc.

I have seven more PT visits approved and scheduled, through November 3. That will make a total of eight weeks and three days of dealing with this lymphedema flare up. I need to order new sleeves and gloves but don't want to do so until the PT has told me my arm is back to normal. I just can't seem to catch a break this time.

Think before you pink

October has rolled around again. Even in September, Yoplait yogurt was advertising on national television for people to lick their pink yogurt lids clean and mail them to the company so it can make a (modest?) donation to Komen for the Cure.

This is a pet peeve of mine: the "pinking" of breast cancer. Getting people to buy pink beribboned merchandise in the hope that some of the sale price will benefit breast cancer research, or support women living with breast cancer.

Personally, I'd prefer that instead of buying more pink ribbon stuff, you simply make a donation in any amount to a worthy breast cancer-related cause.

The people at Think Before You Pink have created some critical questions to ask before you buy pink:

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

When the package does state the amount of the donation, is that amount enough? Fox Home Entertainment, for example, sold “DVDs for the Cure” for $14.95 and donated 50 cents to Susan G. Komen for the Cure. Is this a significant contribution, or a piddly amount? You decide. If you can’t tell how much money is being donated, or if you don’t think it’s enough, give directly to the organization instead.

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

Many companies place a cap on the amount of money that will be donated. For example, Give Hope Jeans, sold by White House Black Market for $88, donated “net proceeds” from the sale to the organization Living Beyond Breast Cancer. But they’ve capped their contributions at $200,000. This means that once they had reached the $200,000 limit they stopped contributing, no matter how many pairs of jeans were purchased.

In some cases, that cap is a generous amount. In some cases it’s not. But you should know that, whenever there is a cap, your individual purchase may not contribute anything to the cause, depending on when you shop and whether the cap has already been met.

3. How are the funds being raised?

Does making the purchase ensure a contribution to the cause? Or do you, the shopper, have to jump through hoops to make sure the money gets where it’s supposed to go? Lean Cuisine, for example, had a pink ribbon on its boxes of frozen meals, but the purchase of the meal did not result in a donation to a breast cancer organization. Instead, consumers had to visit the Lean Cuisine web site and buy a pink Lean Cuisine lunch tote. Only then would $5 of the tote purchase be donated to Susan G. Komen for the Cure.

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

Does the product’s package tell you where the money goes and what will be done with it? For example, Penn is selling pink tennis balls and the package states that 15 cents of your purchase will go to “a Breast Cancer Research Organization.” It doesn’t tell you which organization or what kind of research will be done. Will the money go to fund the same studies that have been ongoing for decades (which already get enormous financial support)? Or will it go to under-funded, innovative research into the causes of breast cancer?

If the donation is going to breast cancer services, is it reaching the people most in need, in the most effective way? The Breast Cancer Site store, for example, donates money to the National Breast Cancer Foundation, which helps pay for mammograms for women who cannot afford them. But mammograms are already covered for low-income women through the National Breast and Cervical Cancer Screening Program. Although this screening program does have limitations, what is most needed is the funding to get low-income women treatment if breast cancer is found. Click here to learn more about this issue.

5. What is the company doing to assure that its products are not actually contributing to the breast cancer epidemic?

Many companies that raise funds for breast cancer also make products that are linked to the disease. Breast Cancer Action calls these companies “pinkwashers.” BMW, for example, gives $1 to Susan G. Komen for the Cure each time you test-drive one of their cars, even though pollutants found in car exhaust are linked to breast cancer. Many cosmetics companies whose products contain chemicals linked to breast cancer also sell their items for the cause.

Think before you spend your money on pink items.

That says it all.