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.