December 30, 2013

Taking it easy

Rik is off from teaching for the winter holidays and we've been taking it easy, getting together with friends, sleeping late, playing with dogs and seeing movies. It's a great time of year except that we have to share the computer…

My fingers continue to heal although my left thumb is still peeling several layers of skin. I found out the hard way that my tongue is still sensitive -- I put four (four!) drops of Sriracha hot sauce on some noodles on Saturday and I couldn't bear the heat. We were at synagogue and I had to grab some cream (the kind used for coffee), put it in a cup, and drink it to cool off the heat. Only dairy seems to cool the fire in my mouth. So I won't be testing any red wine soon.

We did have a lovely meal at Gainsbourg, a local French bistro. My dinner consisted of a fantastic cocktail made with gin, celery shrub, beet essence and something else; shared beet salad with walnuts and goat cheese; and a whole plate of poutine. Oy. Then dessert of yummy hot chocolate and a chocolate truffle. Oy again.

Poutine, for those not in the know, is a Quebecois peasant food that is currently a must-have across North America: fried potatoes topped with brown (or in this case, mushroom) gravy, and cheese curds. It's so delicious I can't resist ordering it when I see it on the menu, but no one will share it with me. And of course I never met a fried potato I didn't like.

More later as our stay-cation continues...

December 21, 2013


I finished cycle 12 of Xeloda with an increase in Hand-Foot Syndrome but only at the very end of the cycle. I lost three layers of skin on my thumbs and first fingers but they're healing nicely. My tumor markers are still stable!

Dr G said, Oh, I'm hurting you! I reassured him that I was coping but really I think I am getting close to the end of my Xeloda tolerance. 

The dentist says my sore tongue comes from the same side effect. Basically the skin covering my tongue has Hand-Foot Syndrome (!). She could hardly believe that I still have taste buds. 

My new opthalmalogist/surgeon says that 18 months of Abraxane likely caused the cataracts in both eyes. I am having the surgery in January, so I get a three week chemo-cation (plus the week recovering from the first surgery). 

Between eye surgeries I'll have one more Xeloda (round 13) and then we will re-evaluate during my second three week chemo-cation. Dr G wants to add Afinitor to the mix (Xeloda, Avaston, Aromasin, Aredia). I had Afinitor before without much luck and plenty of side effects, but I may be close to the end of what I can tolerate from Xeloda. However, Xeloda has me stable and I do tolerate pain well. (I am sad that I had to learn this about myself, but it's one of the things cancer taught me.) There are plenty more drugs out there plus anything new that comes out of the recent ASCO conference.

December 14, 2013

Penultimate day of Xeloda round 12

Yesterday was the second-to-last day of round 12 of Xeloda and it hit me hard. By mid-morning I had diarrhea, followed by fatigue, hand-foot issues, and mouth sores. I decided to cancel the neighborhood Shabbat dinner we'd planned to host for some folks from our synagogue because I could barely hobble, much less shop and cook. Everyone understood and sent me wishes to feel better soon. I slept the rest of the day. Rik ordered some Chines food and I crawled into bed around 8 PM.

The hard thing about all of this was that I'd forgotten how awful the chemo side effects can be, since I don't experience very much on Xeloda. Yes, I have a lot of hand-foot syndrome, but for some reason it wasn't so bad this month. I didn't even have to use henna! But I keep forgetting from month to month what the last two days of each cycle and the first two days of the time off can be like. Xeloda is cumulative, so I feel much worse at the end of the cycle than at the beginning.

So today is the last day. My feet hurt so much when I got out of bed to use the bathroom that I couldn't bear to stand. Rik brought me some yogurt and my morning meds but I stayed in bed until 1 PM. Hunger finally drove me up and by then my feet were less tender, the diarrhea had stopped and I really couldn't sleep any longer.

This is how it goes: I feel rotten, I blog about how rough it is. Then I feel better, I live my life, and I forget to blog except for special things, like holiday celebrations.

I guess I need to put my blogging on a schedule so that I don't go too many days on "quiet mode."

December 04, 2013

Last night of Chanukah

I couldn't resist making latkes one more time for the last night of the holiday. Eating any food fried in oil counts to celebrate the miracle, and so we have eaten latkes, sufganiyot (doughnuts, traditional in Israel), olive oil on salmon, leftover latkes with scrambled eggs, you name it.

Again I will post my adaptation of my father's latke recipe. As my mom and I recalled, Dad would stand at the stove frying while we three sat at the kitchen table. He'd serve up a plate of latkes, start frying another batch, and eat his while standing up. No wonder both his daughters became master latke-makers!

Jill's take on Shellie's Latkes

2 pounds Yukon Gold potatoes, peeled
2 onions, grated
3 large eggs, lightly beaten
Salt and freshly ground black pepper to taste
1/4 cup matzo meal or flour
Avocado or other high heat oil, mixed with olive oil for frying
Applesauce or sour cream for garnish

1. Grate the potatoes by hand using the tiny holes in the grater. Or in a food processor use the thinnest grating blade, then whirl with the S blade to turn potatoes from grated strips into more of a mush. Grate the onions in the same way. Scoop up 1/4 cup of potatoes at a time with your hands and squeeze out and discard the excess liquid, then put in a colander and add the onions, eggs, matzo meal, salt, and pepper, making sure that everything is very well blended. Let batter drain in the large colander over a mixing bowl while you fry.

2. Heat about 1/4 inch of oil in a 10-inch pan over high heat. Scoop latkes using a tablespoon and add them to the hot oil. Don't crowd the pan -- four at a time is plenty. Be careful not to burn yourself! Cook latkes for about 3-4 minutes per side. Drain on a rack placed in a baking sheet with one inch sides (do not use paper towels), and keep warm in a 250 degree oven. Or eat standing up, while they're fresh from the oil.

3. Serve with applesauce at a meat meal or with sour cream or Greek style yogurt at a dairy meal.

PS You can freeze fried latkes in a single layer on a baking sheet. Transfer to a freezer bag or other container. When ready to eat latkes again, reheat in a low oven for about 20 minutes or until warm. This way your house doesn't smell like fried potatoes or stale oil when the guests arrive.

Rik loves latkes!

November 29, 2013

Happy Thanksgivukkah!

It was the best of holidays.....

On Wednesday night we ate the first latkes fresh from the oil with N and K and lit the first Chanukah candles. I froze the rest of the latkes for the next day's big meal.

On Thursday I baked triple-chocolate pumpkin tarts adapted from a Martha recipe )....) and watched the Macy's parade. I still want to be a Rockette, even if I'm an inch shorter than I was and can no longer kick my legs that high.

We gathered at D's home at 4:30 or so. Then T and I stepped up to the cooking with D and A, and everyone else scattered to talk. D's turkey was delicious, T's brussels sprouts were fought over as usual, and I was the only one who ate any of my gravy (but it was VERY good!). I think everyone liked the latkes, because they disappeared.

We spent a long time cleaning up and talking. After an hour or two, we all headed over to our home for dessert. (Over the years we've found that breaking up the meal with movie, walk, etc. means everyone has more room for dessert.) A had baked her first apple pie -- it was so yummy! -- and we scarfed down some of the pumpkin tarts with whipped cream for both treats. (Dunava, those tarts are waiting in the freezer for you.) We lit the candles and ate and talked and ate and talked and sent photos far and wide via Facebook. The dogs hoovered the floor for edible bits of pie.

The Thanksgiving part is over but Chanukah continues for another six nights. I need to venture out of our cozy house to buy Chanukah candles.

It was the best of holidays...and I am so thankful that I was able to participate in the baking; cooking in the crowded kitchen elbow to elbow with friends; and talking the night away.

November 19, 2013

Mom, birthday, and more

My 86 year old mother visited last week. Between tasks for the synagogue and wanting to spend time with her, I found no spare moments in which to blog.

We took a shopping trip but found nothing; we ate a fantastic birthday dinner (her treat); we went to the grocery store and Costco; we had dinner twice with friends; and we talked a lot. It was such a treat to cuddle in her bed after Rik went to sleep and talk about everything and nothing. PBS had an amazing two part special on John F Kennedy, who my mother and grandmother really adored. That opened the door for talks on what kind of person he was, what kind of government he led, and her father's involvement in the Democratic party. While the henna on my hands and feet dried, we shmoozed in depth.

As to the birthday, I clearly can't do math. I turned 54 last Friday, which is three times 18. And 18 is a special Jewish number. In Hebrew, all letters have a corresponding numerical value. The word that makes up 18 is chai -- life. So I had a really special birthday this year, but it took my sister and my friend S to tell me about the triple chai part.

Shabbat Shazam!
To celebrate D and C hosted a marvelous dinner with some of my closest friends. Everyone brought delicious food (all my favorites), and C brought at least two slices of six different cakes from Bakery Nouveau (as well as a twice-baked almond croissant or two). It was a very festive evening, complete with "Shabbat Shazam!" from the Superman birthday candle. (Credit again to S, who is so brilliant.)

Mom left before the crack of dawn the next day, and although I got up to say goodbye, I couldn't make it out the door. Rik drove her and managed her through all the hurdles until her escort showed up. What a guy! He sure makes a great husband and sone-in-law. He came home and went back to sleep. At 9 AM I realized I should get up and go to synagogue for the aliyah I'd requested for my birthday, but I couldn't keep my eyes open. Instead I slept until 2:30 PM and made up for a week of missed naps.

I've finished round 11 of Xeloda and see Dr G tomorrow. More to report then.

November 07, 2013

Haven't blogged in a long time

I am a bad girl. It's just that when I feel well, I don't have so much to say about cancer. It's when I feel bad that I turn to vent on my blog. so it's safe to say I've felt well enough these past two weeks that I stayed away from blogging.

New dog Boychik had to be "vetted" by our vet (this was the day after my last blog post). He was generally healthy, although older than we were told (five instead of three) and had an ear infection, which is so common in cocker spaniels. It's those adorable floppy ears!

The next day was Dunava's concert. It wasn't as well attended as we'd hoped. We want  to raise money to travel to Bulgaria next summer. Most people were already  our followers. Now we have to build an audience that doesn't know us.

I spent the next days recovering from the concert and doing little projects around the house in preparation for the painting of our bedroom. Over the summer Rik noticed water damage over our bed, which we had repaired -- at the price of a new roof! Pete the painter fixed the water damage, cover the entire ceiling with dry wall, and painted our bedroom. The walls are a beautiful teal blue; the ceiling is a lighter shade, and the trim is cream colored. We left the picture rail cream colored as well, so that it would showcase the ceiling color, which extends down to the picture rail. We are very happy with our "aquarium," as Pete calls it.

I saw another ophthalmologist who specializes on cataract surgery. Turns out I developed cataracts from chemotherapy and they have been interfering with my eyesight for several years. My optometrist had told me this story: "When we treat an elderly patient with cataract surgery and s/he dies a few months later, we don't say, oh too bad, he died just after being able to see well. Instead we say, thank goodness his vision was so great during the last few months of his life!" So I will talk with Dr G about cataract surgery next time I see him.

I've started round 11 of Xeloda. More soon!

October 25, 2013

Quickly - new dog

Dr G approved one more round of Xeloda and is giving me an additional week off, because the hand-foot syndrome is still annoyingly painful. Other than continuing fatigue, I am healthy!

Here are photos of Bobka and Boychik (he's the new one, the cocker spaniel).

October 22, 2013

Catching up

I realize I haven't been blogging lately. The last bit of Xeloda round 9 really got to my hands and feet. For round 10 I reduced the dose again, but my hands have still not completely recovered. The skin on the tips of my finger is peeling and has little sensation or pain, depending on what I'm trying to do. For instance, for about a week I couldn't turn on a lamp because holding the switch to turn it was so painful. Rik had to cook for a couple of days too, when I found it painful to hold a knife. Fatigue played a role too, and I had a couple of days of diarrhea.

Last week we had painters in the house to fix the bedroom ceiling where water had leaked. We had the roof re-done during the summer, but the painter wasn't available until now. So every day I woke up when Rik left the house, about 6:45 AM, which is very tough on me. The painters arrived around 8 AM every day, but didn't always stay the whole day as things were drying. The result, aside from my fatigue, is a beautiful teal blue color on the walls, a warm cream color on the trim, and a lovely lighter teal on the ceiling. I bought drapes in brown with a teal, green and yellow pattern.

We moved the furniture back in (having slept on the sleeper sofa during the week) and friend L came over and reconnected the dealing fixture. All that's left is to rehang the art, a small mirror, and the Japanese haori jacket S gave me. It's purple with teal trim, so it will look beautiful on the teal blue wall.

More later about our new rescue dog!

October 14, 2013

End of round ten

I've had ten cycles of Xeloda and am apparently still doing well, although my hands and feet are very bad right now. My hands have that burning sensation and it's hard to use them for anything in small motions, like chopping food with a knife. The webbing between the thumb and forefinger is particularly painful.

My feet are, by turns, either or both numb from neuropathy and painful from hand-foot syndrome. It's hard to walk when I first get out of bed, then it eases up, but after only a couple of hours I can't stand any longer.

I don't mean to only complain in this post, but these side effects are the realities of living with metastatic breast cancer.

October 10, 2013

Another loss

My support group friend D went into the hospital last week and began comfort care over the weekend. He died today at 3:45 pm, just as we in group had finished talking about him.

Cancer, this terrible disease, strikes too many people at too young an age. D was diagnosed less than a year ago. He came to group filled with anger at his diagnosis and unsure how to react to it. Over the few months I knew him, he moved from anger and frustration to acceptance and focused on living his life with cancer. I am sure going to group helped him to learn coping skills. Meeting other people with advanced cancer also played a big part in his acceptance of his situation.

D was a gentleman in every sense. When B and I needed rides every week this  summer, because Rik was working and he needed our car, D came though week after week. We three developed a deeper relationship during our weekly commutes and even on our last ride, we benefited from one another's wisdom.

D leaves behind a wife and teenage children, as well and many other family and friends. Zichrono l'vracha -- May his memory be for a blessing to all who knew him.

October 02, 2013

Last catch up

Since we've been back in Seattle I've bought lots of groceries, ran some errands, and taken down my part of the sukkah. We had a sunny afternoon yesterday, and I spent a hour or two taking down the decorations, throwing the s'chach (greenery) off the top of the sukkah, and sweeping the needles and green bits off the deck. (The next day was compost, recycling and garbage day.) I checked all the electric lights before packing them up, and have some of the decorations drying on the table while the rest of the stuff went straight into the storage box.

I made dinner for a shul family needing support, and have two other meals to make on Thursday and Friday. I sure hope no one gets tired of sesame cold noodles!

More catching up

Rik and I went to Vancouver BC for the bar mitzvah of the son of close friends. It was also the first time we took the all-electric Leaf on a road trip...

There are several high-speed charging stations on the highway from Seattle to the Canadian border. We headed for the first one north of us, about 65 miles away. We arrived there basically on "fumes," with only two miles remaining on the car's electric charge. It takes about 30 minutes for the car to charge about 80%.

We then drove to the next charging station, about 20 miles away, and charged again to 80% of maximum. Then we waited about 40 minutes to cross the border. We arrived at our hotel with 12 miles left on the charge. Luckily the hotel has an underground garage with electric outlets scattered throughout. We found the perfect parking spot and plugged in our portable 110 volt cord, and by the next morning the battery was fully charged.

This whole experiment took almost six hours, instead of the usual 2 1/2 plus the wait at the border. We were freaked out as well each time the car battery registered too low, wondering if we were going to make it to the next charging station. We have decided that the Leaf is great for driving in town, but that it sucks as a road trip vehicle.

Otherwise we had a great time. The bar mitzvah boy did extremely well with his singing and his Hebrew. His speech, on Cain and Abel, was insightful. As a younger brother, he brought a lot of personal experiences to his talk. The rabbi did something unusual. For each aliyah, he called up first the out of town guests, then the in-town guests, next family members and lastly the parents and the bar mitzvah boy. It was a most unusual way to involve everyone in the room in the service. And it was the boy's grandfather's birthday, so we sang Happy Birthday to him (and he was extremely pleased).

After a bounteous lunch, we headed back to the hotel and I took a long nap while Rik caught up on Canadian news. We joined our friends and their family and other guests for dinner at an Indian restaurant. Upstairs was a private room, decorated in a traditional manner. The food was yummy and spicy, a three piece jazz combo (two guitars and a bass) played mellow music, and everyone talked.

We met my cousins for breakfast on Sunday morning. It's been great to see them more frequently since they live so close to us, and to get to know their children as they grow up.

The drive home was just like the drive to Vancouver, expect that the border wait took an hour. We were again fried from the stress of not having enough electric charge to make it home, and luckily found an open Nissan dealer with a high-speed charger to get us enough juice to get home. What we would have done at night, I don't know. Probably called the Nissan help line and gotten a ride to a charger. But it would have been terrible to run out of charge on the highway. So no more road trips for the Blue Pumpkin.

So much to catch up on

Let's see ... Our synagogue honored me on Simchat Torah, we drove the Leaf to Vancouver BC to spend the weekend at a bar mitzvah, I took down most of the sukkah, and we might adopt a second dog. Whew!

Every year Beth Shalom honors two members on the holiday of Simchat Torah, when we finish reading the Torah and start it all over again. All the chairs were moved out of the center of the sanctuary, and people were singing and dancing with the Torah scrolls. When it came time to honor us and read the Torah, everyone formed two lines facing each other, and E and I were carried through the lines sitting on chairs. It was very exciting to be so surrounded by our community.

A congregant spoke about both E and I. In her case, the speaker was a woman who is basically her "adopted" daughter and a great teacher. In my case, it was a friend who's known me for a long time. They both said lovely, truthful and thoughtful things about us.

We each received an aliyah to the Torah. I think I received the last aliyah because of details having to do with my Kohen status, but who knows? It could just as easily been age first (E is a senior). At any rate, I looked over the shoulder of the Torah reader to see the beginning of Genesis in its original Hebrew.

After services we ate a good lunch, and then Rik and I headed north to Vancouver BC. See the next post for details.

September 25, 2013

End of Sukkot holiday

It's been rainy and cold as we end the Sukkot holiday. I don't want to walk the dog or eat in the sukkah when the weather has changed so quickly and dramatically from summer to winter. So I made Rik drag up the boxes of wool sweaters from the basement and I changed over my wardrobe in the hope that I could warm up!

Thank goodness Bob the dog is happy walking or not walking. In fact, his favorite pastime seems to be laying on a dog bed and sleeping.

Now I'm off to get Avastin-ized!

September 19, 2013

Xeloda round 9 and holiday update

I finished the ninth cycle of Xeloda on Tuesday and I am paying the price for agreeing to up the dose back to max again. I just never remember that increasing the dose gives me terrible side effects of more hand-foot syndrome, diarrhea, and fatigue. I stumble around because my feet hurt and I sleep until late morning because I'm so tired. At least I have the good tincture of opium to dry up the diarrhea. But for four days in a row?!

The Jewish new year holy days have been lovely. This year's fast for Yom Kippur was particularly long because the holiday fell so early in September. We gathered for a quick dinner at 5 PM and headed off to synagogue at 6:15 or so to get good (i.e. comfy and not folding) seats. Services began at 7:15 and the fast ended at 8:15 the following day, so it was a bit longer than a 5 hour fast.

I enjoyed leading Yizkor, the memorial service. It's an honor and a pleasure to help people remember their loved ones who have died. I try hard to give enough emotionally so that I can connect with people's feelings, but not so much that my focus on my own losses distracts from my leading the prayers.

Ne'ilah, the closing service, is usually highly energetic at our synagogue. We've been together as a community for a long day, we've prayed together, sung together, and listened to words of wisdom from members and our rabbi. We conclude with a final blast from not one shofar but many shofarot. Anyone, of any age, who brought a shofar to the synagogue can stand up in front and try to hold the longest note. The noise defines cacophony, and the shofar blower holding the longest note this year was, as usual, my friend K. Man, can that man make his shofar sing!

The next day Rik and some friends built the sukkah, a shack resembling what our ancestors lived in while they were bringing in the crops. The harvest aspect is like Thanksgiving, and the decorating aspect is kind of like Christmas (evergreen boughs, lots of silly decorations, and lights). This year marks the 19th since Rik and I met during the Sukkot holiday. He says building the sukkah is a lot of work, but the finished product always makes him happy, because it reminds him of the day we met.

September 13, 2013

Brain scan results good

My recent brain MRI shows stable disease -- some mets are 1 mm smaller, some are 1 mm larger, but overall this means stable disease. Now that's a nice way to start the new Jewish year.

Gmar hatima tova -- May you be inscribed (in the Book of Life) for Good.

September 03, 2013

Starting a new year

Tomorrow night marks the eve of Rosh Hashanah, the Jewish new year. I have a lot to be thankful for as this High Holyday season begins.

I appear to be in good health, with tumor markers continuing to fall while I am taking Xeloda. There are few side effects, and the most annoying (Hand-Foot Syndrome) has responded well to henna. I would like to continue taking this chemo as long as possible because it is so effective and so tolerable.

Today my shrink Dr Dobie offered suggestions on how to treat my chronic insomnia. I was taking the Cymbalta at the wrong time of day! Tomorrow I will begin taking it in the morning. I can increase my dose of Ativan and take it 90 minutes before bedtime. These two shifts should help me get better sleep.

I just spent the long weekend in Cincinnati with my mother and sister. We went for a family wedding, but this was also the first time we'd ever taken a trip together, just us girls. We laughed and talked and had a great time. I took the opportunity to reconnect with three high school friends. We started at 6:30 pm and closed the restaurant down at 11 pm. Marvelous! Plus I ate Graeter's ice cream every day. The wedding was fun too, as was spending time with my distantly related cousins. We've been close since 1968, when my family moved to Cincinnati, and have shared one another's simchas over the years. I think the bride is my third cousin, once removed.

As far as spiritual health, all I can say is that I am a practical Jew in the way that Hadassah is practical Zionism. Hadassah builds the land of Israel; I cook, sing, dance and generally find ways to bring joy to my life on a daily basis.

That's what I've learned through 11 years of living with advanced cancer: live your life with joy every day.

L'shanah tova u'metukah -- to a good and sweet year!

August 29, 2013

Rain, rain, go away...

Unbelievably, it's raining and cool in Seattle these past two days. Normally August and September are the most beautiful months of the year, when it comes to weather. Right now it's pouring! I planted some lettuce and chard seeds yesterday. I guess I won't have to water them any time soon.

I think I will curl up with a warm puppy and a good book for a bit. Maybe a cup of hot cocoa too...  At least it's not so cool that we have to put the heat on. That's been known to happen from time to time. When my sister and niece came to my 5th metsiversary, it was so cold we had to loan them long pants, long-sleeved shirts, and fleece.

What else can you do when it pours?

August 27, 2013

Starting Xeloda cycle 9 next week

I saw Dr G today and he says my tumor marker has fallen a few more points (now 152). My other numbers all  look normal, including my liver function (an indication of the health or lack thereof for my liver mets).

However, I did complain to him about recently having to "reach" for words. You know, when you can describe the thing but can't come up with the actual word right away. Dr G says it could be a sign of chemo brain, or even middle age, but he wants to order a brain MRI in case it's my brain mets acting up.

I will have the brain MRI on September 9th and see him a few days later to get the results. In the meantime, I will continue on the same regimen of Xeloda daily by mouth, Avastin every two weeks by infusion, and Aredia and Faslodex (infusion and injection) every four weeks.

I say, let's drink rose wine, eat ice cream, pick the blackberries and generally enjoy the rest of the summer.

August 20, 2013

Happy metsiversary to me!

Today is the eleventh anniversary of my dance with advanced cancer. Eleven years ago today, August 20, 2002, I got the news that my cancer had returned and I broke my left femur, which was riddled with metastases. Read all about it here.

In these eleven years, I have been on many medications. I've had multiple side effects. My cancer has been stable, has grown, and has been stable again. Right now it's stable on Xeloda and a combination of other drugs, thanks to the brilliance of my oncologist, Dr G (yes, he is the smartest man in the world), and to my indolent (i.e. lazy), slow-growing cancer.

I've lost so many friends to cancer over these eleven years and longer. Some I knew well and were particularly dear to my heart (oh how I miss Charisse, Emily, Josh, Dena, Sirron, Stephanie). Others I met through support groups or as mentorees through Sharsheret and Young Survival Coalition or were referred by friends. Each death was a loss to me. How can I not have survivors' guilt after losing so many, especially young, people?

And yet, here I am -- kind of an Energizer Bunny of metastatic breast cancer. I just keep ticking along. I now have brain mets, bone mets, and liver mets. Each new diagnosis whirled me yet again on the cancer merry-go-round.

But whether I am riding up and down on a merry-go-round pony or sitting on a bench, I am still a "glass half-full" person. That natural optimism helps me cope with the pony's ups and downs. I think I live a better, more fulfilling life because my glass seems always half full. At least it's easier to cope this way.

And to you to whom I may seem like Pollyanna, you've also read about my hard times here on this blog. To those who see me in public and think I look so well, it's because when I feel poorly, I don't go out. Some days I only move from the sofa to the bathroom and back again. Rik cares for me, Bobka the dog cuddles with me, I eat a piece of chocolate and am thankful that my life does go on.

So today is the one day I might give cancer a big, wet Bronx cheer, otherwise known as a "raspberry." And we will celebrate with good friends, delicious food, and my personal four food groups -- chocolate, champagne, whipped cream and potato chips (I never met a fried potato I didn't like).

To all my doctors and nurses, to the health care assistants who cheerfully welcome me and treat me like a real person and not a diagnosis -- thank you. This dance with cancer is a partnership among us all.

Here's to living with cancer!

August 14, 2013

Dunava on the radio

Tune in to KBCS FM on Friday morning around 11 a.m. PDT to hear my choir, Dunava, singing songs from our new CD, Bulgaria, on The Caravan

Seattleites: it's at 91.3 FM. Everyone else can stream online at KBCS.

August 12, 2013

More insomnia

I've had several more bouts of insomnia lately. Even Rik joined me in not being able to sleep one night last week!

I can't figure out why this is still happening. I weaned myself off nightly Ativan at least two weeks ago, but when I get into bed I find I cannot fall asleep. And when I finally do fall sleep, usually around 2 or 3 AM, it's patchy -- I awake frequently -- and I hardly ever feel rested. So I stay in bed until 10 AM when I tell myself I really need to get up.

I may have developed a very short window after getting into bed when I can fall asleep easily. But if Rik coughs, or I turn over, or someone says something, sleep ends for me until the middle of the night.

Last Friday night it also didn't help that some young men were standing in front of our neighbor's house (across the street) talking and carrying on until almost 3 AM when a thunderstorm and rain finally drove them away.

I try not to nap during the day so that I hopefully can sleep at night. I am open to trying new techniques to deal with insomnia. I already practice yoga breathing and counting backwards from 100. I really prefer not to get out of bed in the middle of the night.

August 05, 2013

Bharatanatyam Arangetram

Yesterday we attend the Bharatanatyam Arangetram of one of Rik's students. A truly over-achieving kid, she spent the last year improving her skills at classical Indian dance in order to give a recital for her Arangetram, to celebrate coming of age as a young Indian woman. Wikipedia call an Arangetram "the debut on-stage performance of a classical art student, after undertaking years of training. It is a graduation performance for any art form."

M is a remarkable dancer, having spent 15 years studying various Western forms and three years studying classical Indian dance. I was amazed at her grace, skill and stamina as she danced for three hours in a solo performance, accompanied by live music from a traditional drummer and flutist, her cousin the singer, and her guru/dance teacher. Her mother told us that M practiced six hours a day for the past months, and needed acupuncture weekly in order to keep dancing at that pace. One of her solo pieces was 35 minutes long!

M's family invited her family, friends and teachers to enjoy the Arangetram and stay for a delicious vegetarian Indian dinner after the recital. M is evidently extremely bright and dedicated to her many passions. M's fifth-grade teacher teacher said to the hundreds of people present that M is happiest when she is learning something challenging.

To protect M's privacy, I won't post any photos, but please search Arangetram to see colorful images of classical Indian dance costumes.

The whole recital was a reminded us of attending the bar or bat mitzvah of a brilliant young person who can lead the whole service in Hebrew and chant both the Torah portion and the Haftorah. Rik and I were honored to be included in his student's latest triumph!

Best breast cancer blogs

Healthline just named this one of the 24 best breast cancer blogs of 2013. I am honored to be included in this group.

My blog is listed here. Scroll through the rest of the blogs to learn a little more about what it's really like to live with breast cancer.

July 29, 2013

I am a Bad Girl

Sorry I haven't posted more. When I feel well, I tend to be too busy to blog. Here's the recap:

Dr G says my numbers are good. The tumor marker has gone down another 20 points, so I am staying on Xeloda for another month. But somehow I got hooked on the nightly Ativan. Of course, I'd been taking it for about two months... Dr G recommended it as a way to "quiet" my feet at night, by taking 1 mg of Ativan an hour or so before going to bed.

Sadly, Ativan is a bit habit=forming, and after eight weeks, 1 mg was no longer enough to give me good sleep. So now I am dealing with rebound insomnia. I didn't sleep at all for a couple of nights, then took an Ambien, then didn't sleep again at all last night.

My feet continue to feel numb and painful at the toes. The neuropathy is a holdover from almost two years ago when I was on Abraxane. It leaves the body very slowly, in some cases never. So it's lingering in my feet at the toes, the last extremities.

In any case, I've felt well enough to go to synagogue, out to dinner, cook dinner, etc. Yesterday was the start of my second week off Xeloda, and I hope to feel even better and get more sleep!

July 18, 2013

Tumor marker continues to drop

I got a peek at my recent labs and my tumor marker continues to fall. It's down another 20 points or so (I can't remember). Since my Xeloda side effects are still minimal , with three days to go on this cycle, I will hope to stay on this as long as it works.

My feet are a little tender, especially the heels, and the joints in my thumbs feel the same. Nonetheless, this is much improved over the last cycle of Xeloda. Perhaps the henna is working!

July 15, 2013

All is good

My dear friend N reminded me today that I needed to update my blog, that people worry id they haven't heard from me for a while.

Basically, all has been fine since I last posted on July 6.  And when I feel good, I tend to be busier than not, which leaves less time for blogging.

My days have been basically the same: a doctor's appointment or other errands in the mid-morning that last until early afternoon, then a two hour nap, then dinner prep and an evening with hubby Rik.

I'm continuing to put henna on my hands and feet every other day (see Pub Med abstract). Today is Xeloda day 8 and my hands and feet are in pretty good shape. If things worsen, I imagine I will feel it by Thursday, but I am hopeful that the henna will help.

Tomorrow I start getting my Avastin and Aredia at Swedish Cancer Institute, since the Minor and James infusion center is no longer serving patients. I look forward to seeing my fave nurses at SCI!

July 06, 2013

Tomorrow starts Xeloda round 7

Today is my last day of respite from Xeloda. Tomorrow I start round 7. Having the extra week off has improved my feet and hands, but so has henna! A friend sent me this link to a 2007 PubMed abstract, claiming that henna, applied topically to the palms and feet, eases the symptoms of Hand-FootSyndrome.

I went to an Indian grocery store, bought some henna for use in body art (i.e., temporary tattoos), mixed it with water and began slathering it on my feet. They turned orange from the dye, but appear to be healing. It's only been a few days, so I don't know if the improvement is due to the henna or just time off Xeloda, but it can't hurt to try this for a couple of weeks.

Deciding that I didn't want orange palms, young friend R suggested I get henna tattoos on my palms. She volunteered to do it, but I didn't have the henna with me at the time. H and (another) R were at dinner with us last night, and they were willing to try painting my palms. Here is the result of their art:

Both hands

Right hand detail
Left hand detail

Finished product

 When the wet mush dries, it leaves behind black patterns that flake off, revealing the orange underneath.

Rik will help keep up with the painting every other night for a week or more, so that we can find out how much it helps in this next round of Xeloda.

For a how-to guide, check out Xeloda side effects: Henna Tip For Hand-Foot Syndrome. NOTE: I did not use lemon juice because of the cracks in my hands. To make the designs, we used a thicker henna base, put some in a plastic bag, and cut a very tiny corner (similar to using icing bags and tips to frost a cake).

July 01, 2013

Cancer stats

For those who are statistically minded, here is a graph of my tumor markers from 3/24/2004 to 6/18/2013. (Dr G likes to show me these graphs but I've never shared them.) Sorry if it's too small to read...

Plus here is my list of medical issues:
AR (allergic rhinitis)
Blurred vison
Bone metastases
Brain metastases
Breast cancer
Cancer-related pain
Cardiac murmur (I've had since childhood)
Cataracts, bilateral
Choroidal nevus of left eye
Drug-induced neutropenia
Herpes zoster
Hip fracture
Osteonecrosis of jaw doe to drug
Pathologic fracture of femur (same thing as the hip fracture)
Pathologic rib fracture
Peripheral neuropathy
Post bilateral salpingo-oophorectomy
Staphylococcus carries

I can't even tell you what all these things are. (I think dyslipidemia has to do with cholesterol.) And I'm not going into my extremely long list of medications! But even with all these issues, I look forward to my 11th anniversary of living with metastatic breast cancer on August 20, 2013.

June 28, 2013

Good news on tumor markers

Sorry to be slow in reporting the good news, but I have had extremely low energy for the past ten days, which is why I haven't blogged much.

Last week's labs showed a decrease of more than 40 points in my tumor markers, now below 200 for the first time in a long time. Yay!

Dr G says my feet are "barely tolerable" but we agreed on a new regimen. I will have two weeks off between Xeloda cycles. As of today it's been one week and my feet are a little better, my hands too. I hope that an additional week without therapy will help.

The diarrhea has stopped but it lasted for about a week.

A friend came across the idea of using henna to aid in Hand-Foot Syndrome. The Pub Med article is here. Monique Doyle Spencer, who has used henna successfully to treat her HFS, posted about it in her blog,

The fatigue continues to knock me down. Yesterday I took and morning nap, went to my support group, and took an afternoon nap afterwards. Today I slept until 11 AM, missing a meeting, and I'm ready for another snooze now. I don't have much energy for house chores, except laundry, but Rik has picked up making dinner, shopping, and much more.

I hope this additional week off Xeloda will help restore energy as well as give me more comfort in walking. I'm getting very good use out of my bright pink UGG bedroom slippers, the only things I can tolerate walking in!

June 23, 2013

Diarrhea again

The Xeloda pattern seems to give me diarrhea at the end of the second week or the beginning of the third (off) week. Today has been miserable, with tummy upsets. I am taking the tincture of opium but not sure it's really working. It's holding back each round of diarrhea by about six hours. I can take it more often (up to every three hours) but I don't want to go too far in the other direction.

I got on the sofa right after breakfast and slept for several hours, then woke up to use the bathroom, drink a glass of water and eat some crackers. This is also the part of the cycle when I lose a couple of pounds -- I don't have much appetite and I'm afraid to eat all the yummy fruit we have in the house. So it's BRAT for me (bananas, rice, applesauce and toast). And water.

My feet are still red and painful, same for my hands but not quite as much. I see Dr G tomorrow so will faithfully report all these side effects.

June 21, 2013

What Hand-Foot Syndrome looks like

Left hand
Right hand
You can see every line in my hands. The redness doesn't photograph well but occurs at every fingertip and in the webbing between the fingers, especially between thumb and index fingers. This is what Hand-Foot Syndrome, a side effect of Xeloda, looks like.

Right heel: see how cracked and red? Plus a spot where skin is peeling off. Ouch!

Hand-Foot Syndrome

Xeloda's Hand-Foot Syndrome side effect has really got me these days. Today is the last day of 14 when I actually take the drugs, then I get a week off. The problem is that the pain in my palms and soles has gotten much worse over the last couple of days. It was so bad last night that I had to skip the first synagogue board meeting of the new year. I couldn't stand, couldn't walk, could hardly sit without discomfort. My hands are bad enough that it's tough to open a jar or turn off a lamp switch.

Both my palms and soles have peeling skin and all the lines that you normally don't see are visible. I have some cracks in my soles as well as some peeling skin.

H-F S happens when the chemo leaves a body. Normally that takes place via urination, but in the case of Xeloda and some other chemos, it leaves the body via the palms and soles, causing burns as though from the inside out. And the ongoing neuropathy in my toes doesn't help either.

I'll try to get Rik to take some photos so you can see what I'm talking about. In the meantime, maybe a piece of that MMJ brownie might help....

This is my right foot. Note the red areas on the heel and ball of the foot. Ouch!

June 12, 2013

Xeloda round 6 / MMJ

The fifth round of Xeloda knocked me down pretty hard. I had diarrhea and bad hand-foot syndrome for seven days, maybe longer. My hands have started to clear up as I start round 6 but I don't know how much more I can take. Tincture of opium finally cleared up 7 days of diarrhea.

I went to a medical marijuana coop yesterday and got a thorough education from the staff. Evidently some kinds of mj have more THC, the cannabinoid that makes you high, and other types have more of the cannabinoids that help relieve discomfort. I bought some salve for my feet (supposed to be helpful for neuropathy), and will use it for a week before commenting. They gave me  some "medibles:" a lollipop to suck on when pain is bad, and in lieu of a gram of MJ (I don't smoke), a 'special' brownie. 

I cut the brownie into 8 tiny pieces and tried one, even though I didn't have pain at the moment. I caught up on the ironing and went to take a nap. As soon as I lay down on the sofa I knew I was high (this is 90 minutes after eating the brownie bite). 

I felt detached from my body, had trouble focusing on a phone call, and slept hard for three hours. Basically it reminded me of morphine highs. I didn't really care for the experience but meanwhile the brownie is in the freezer. If I have nausea or other side effects, I can always take another bite.

June 06, 2013

It goes on and on

Although my diarrhea has slowed considerably since starting the tincture of opium, it's not gone away completely. My feet are still bright red and they get tender by the end of the day, and I don't have much appetite. My energy has improved, though. That's a good sign.

I'm enjoying the sunshine from my spot on the deck lounge chair, but wish I could be playing in my garden. So much still to do!

June 03, 2013

Still with the diarrhea

It started Wednesday night and hasn't stopped yet. The Lomotil prescription from my oncologist didn't help any more than the OTC Immodium.

So I called Nurse Jaque this morning and she spoke with Dr G, who gave me a prescription for tincture of opium. This helped once before when I was hospitalized for about two weeks after a poor reaction to 5FU. I've had one dose and am supposed to take it every three hours. I sure hope it helps, because given the choice, I'd rather be constipated than have diarrhea.

I was very fatigued today as well and spent a long time on the couch. Yesterday two of my best friends came over for a long visit, which turned into an impromptu dinner (rice wraps with veggies and chicken) and a large selection of incredible desserts from Bakery Nouveau. We all over-indulged in chocolate praline cake, chocolate cheesecake, twice baked almond and chocolate croissants, fruit tart, and carrot cake (burp). I felt so much better with all the company, but I was extremely tired after they left and I think it carried over to today.

The lovely sunshine today made me want to work in my garden, but wasn't a strong enough impulse to actually get me out on my hands and knees. I did sit in the hammock and read for about an hour, which was delicious. And I watered, because it's supposed to be very warm this week.

May 31, 2013

Xeloda side effects

(Don't read this if you think candid talk about cancer side effects is TMI...)

I finished the last dose of Xeloda yesterday, but the day before the diarrhea and fatigue had already begun. Yesterday I "crashed" on the way home (not literally) -- had to call my mom to have her keep me awake while driving, and yes, my car has a hands-free cell phone. As soon as I got in the door I ran to the bathroom yet again.

The diarrhea has been frequent enough, every four to six hours, that even a double dose of Immodium (the "oncology" dose) taken at each episode wasn't helping enough. Rik took care of everything while I was on the sofa. He fed and walked the dog, ordered Chinese food and then went to pick it up, fed me dinner and let me grouse to him. It's funny that even with diarrhea, I still get hungry. (I wonder, if I fasted but drank water, would the diarrhea stop sooner?)

This morning everything hit as soon as I finished breakfast -- diarrhea and crushing fatigue. I spent the entire day snuggled with the dog on the sofa, except for bathroom trips. At 2:30 PM I called Dr G's office and spoke with Nurse Jaque, who then talked with Dr G. There is a prescription for something stronger than Immodium waiting for me at the drug store. However, things may be easing up, so I may not get it.

At 5 PM I got up and went for a tour of my garden. The sun had been shining all day long, and I wanted some fresh air. I saw one fig on the fig tree, some cherries on the pie cherry trees, and MANY raspberries. There were even some Chester berry flowers already. A few potatoes left over from last year have sent up leaves. The snow peas are about two inches tall, and the red chard is growing nicely. The salad greens aren't doing too well. Maybe I should plant from starts instead of seed.... My tomatoes are a foot tall, but two of the three basil plants have died.

I'm trying to drink lots of water, I feel perkier (hence the blogging) and hope to be better tomorrow. Meanwhile no groceries, no Shabbat cooking, but Rik has walked the dog, ordered pizza for dinner and he will make the bed with fresh linen.

May 24, 2013

Back to Aredia

Dr G spoke with my dentist Dr Amy; I spoke with my orthopedist; Dr G and I conferred together and everyone agrees that my bones need more protection. So this week I started again on Aredia, a bisphosphonate that strengthens bones. Of the three major such drugs, Aredia is the oldest and the least strong. Hopefully it will not cause any issues with my osteonecrosis of the jaw and hopefully it will increase my bone strength. I first took it ten years ago when my mets were detected.

This week's infusion lasted a very long time. I arrived at 11 AM. First the nurse had to hook me up. The lab was quick and had my Avastin to me in mere minutes. That infusion lasted about 35 minutes (good to the last drop). Then we started the Aredia drip, which is supposed to take about two hours. Well, what with the whole "good to the last drop" thing, it took almost 2 1/2 hours to finish. Then it was time for my monthly double shot in the tusch of Faslodex. It was about 3:30 PM when we left and then I absolutely had to have an ice cream at Molly Moon's (earl grey with hot fudge -- yummy!). Special thanks to my friend J who sat with me the whole time, got us lunch, and kept me entertained.

I will continue with all three drugs once a month. On the other hand, the Avastin is only every other week. Hopefully adding in the Aredia will make a difference in my bone health.

I will continue on the Xeloda for the time being.

May 13, 2013

A spring bouquet from our garden!

Slow blogging these days

It seems to me that the better I feel, the less often I blog. I've felt pretty good since getting Dr G's word that all seems stable. Here's the report from last week's visit.

At my request, Dr G is putting me back on the standard dose of Xeloda starting this week. I figure, if I felt good this last time, maybe I could tolerate the standard dose better now.

I've recently noticed some arthritis in my thumbs. It's not very painful, but noticeable, especially when I use my hands to open a jar, etc. Dr G told me that although most cancer drugs actually help arthritis improve, evidently aromatase inhibitors make it worse. So I will stop the Aromasin for the next few weeks and we'll see if that helps the arthritis.

My insomnia has worsened due to the neuropathy in my feet. I feel the stinging/numbness/pain every moment of every day, but it doesn't usually bother me while I am awake. As soon as I get into bed, though, I lie awake for hours listening to my feet "talk" to me. By the time I take an Ativan it's often 2 AM, Even if I don't take an Ativan, I don't fall asleep until 2:00 or later. Both my friend J and Dr G recommended the same thing: take the Ativan earlier in the evening. So I am trying to take it at 9 PM but I don't have any meaningful data to report yet.

I am probably going to start taking the bisphosphonate Aredia again in two weeks. Dr G still needs to connect with my dentist, but I sure they will talk soon. My bones need the extra protection, and that may outweigh the risk of increased ONJ. Dr G will order the Aredia and Avastin to be given one after the other so my time in the chemo chair can be all on the same day for two hours instead of one.

May 07, 2013

Another loss

I just heard that another friend of mine has died of metastatic breast cancer. A young woman in her 30s, we became friendly when she was originally diagnosed and then when her disease spread. I had recently referred her to Dr G when she became disenchanted with her previous oncology care. She had extensive bone and brain mets, possibly lung and liver as well. I had tried to check in with her just this past week, but didn't realize that her health had failed so rapidly.

This is why breast caner is a tragedy. Here was a lovely young woman who hardly had a chance to start her adult life when her fast-growing cancer hit. She had to retire from work, could not continue the Jewish education she loved so dearly, and moved into a group house when she could no longer live on her own.

I wish I could say more, but want to protect her family's privacy. Nonetheless, I will try to go to her funeral and the shiva minyan tomorrow.

May her memory be for a blessing to all who knew her.

April 30, 2013

Interesting NYT article

In last Sunday's New York Times article, Our Feel-Good War on Breast Cancer, author Peggy Orenstein discusses a number of issues related to breast cancer, particularly the need for mammography. She also said the following:
According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period. (Bold type my emphasis.)
I've been saying this for years, Instead of raising awareness (as if anyone in the US was somehow not yet aware of breast cancer), we should be spending money on research to treat and cure.

As Orentein writes, "Breast cancer in your breast doesn't kill you." It's metastasis to organs that kills about 40,000 women a year.

Orenstein concludes:
It has been four decades since the former first lady Betty Ford went public with her breast-cancer diagnosis, shattering the stigma of the disease. It has been three decades since the founding of Komen. Two decades since the introduction of the pink ribbon. Yet all that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.

April 25, 2013

Scan stable/improved

My recent CT scan shows improved and stable disease in my liver - yay! There is some concern about my bones, especially since my rib fractured just before we went to Hawai'i. I will see my orthopedist tomorrow and get his opinion on what to do about the fracture, if I should go back on a bisphosphonate, and whether we would get more information from a bone scan.

Dr G is going to talk with both Dr Flugstad and Dr Winston, my specialty dentist, about the potential impact of Aredia on my jaw. The oldest of the bisphosphonates and actually the least powerful (we looked it up today), Aredia might be a good choice, but all the docs have to weigh in.

More news tomorrow!

April 20, 2013

Aloha oe

Yes, we were in Hawai'i this past week, so my talk of "taking it easy" was really taking it easy! We spent three nights on the Big Island and saw the Kilauea crater in detail. Then we went on to O'ahu for four nights in Waikiki. We climbed Diamond Head (elevation 760 feet!), swam in the ocean, took photos in Chinatown, and ate extremely well every day. I even took a hula lesson!

Bathing beauty

My first lei

Rik does his camera thing

View from Waikiki Hyatt to Diamond Head 

Kilauea crater lets off steam

View from the top of Diamond Head

April 17, 2013

Rib seems okay

My rib doesn't hurt nearly as much as those first two days. Maybe it's a very small fracture after all. I'm still trying to take it easy and have managed to at least lay down if not sleep every afternoon. Had a little diarrhea for no apparent reason but Immodium is taking care of it.

April 11, 2013

A must-read

This is a wonderful piece by Roger Ebert, published at Click here for the full article.

I do not fear death

I will pass away sooner than most people who read this, but that doesn't shake my sense of wonder and joy

Roger Ebert was always a great friend of Salon's. We're deeply saddened byreports of his death, and are re-printing this essay, from his book "Life Itself: A Memoir," which we think fans will take particular comfort in reading now.
I know it is coming, and I do not fear it, because I believe there is nothing on the other side of death to fear. I hope to be spared as much pain as possible on the approach path. I was perfectly content before I was born, and I think of death as the same state. I am grateful for the gifts of intelligence, love, wonder and laughter. You can’t say it wasn’t interesting. My lifetime’s memories are what I have brought home from the trip. I will require them for eternity no more than that little souvenir of the Eiffel Tower I brought home from Paris.
I don’t expect to die anytime soon. But it could happen this moment, while I am writing. I was talking the other day with Jim Toback, a friend of 35 years, and the conversation turned to our deaths, as it always does. “Ask someone how they feel about death,” he said, “and they’ll tell you everyone’s gonna die. Ask them, In the next 30 seconds? No, no, no, that’s not gonna happen. How about this afternoon? No. What you’re really asking them to admit is, Oh my God, I don’t really exist. I might be gone at any given second.”
Me too, but I hope not. I have plans. Still, illness led me resolutely toward the contemplation of death. That led me to the subject of evolution, that most consoling of all the sciences, and I became engulfed on my blog in unforeseen discussions about God, the afterlife, religion, theory of evolution, intelligent design, reincarnation, the nature of reality, what came before the big bang, what waits after the end, the nature of intelligence, the reality of the self, death, death, death.....

Fractured rib

Tuesday night's painful spot on my right side turns out to be a fractured rib. Dr G says I can tape my rib if it hurts more so I have the duct tape at the ready (his recommendation!).

I probably won't heal from this as easily as most people without cancer, so Dr G will talk with my orthopod and a thoracic surgeon to see if I will need surgery. I do have a CT scheduled soon.

I have no idea how my rib broke. Maybe Bob the dog jumped on me one too many times?

I plan to lay low for a bit and not stress my side, so don't be surprised to see fewer posts in the next week.

April 09, 2013

Tumor markers down

The third (and slightly reduced) cycle of Xeloda appears to have worked. My tumor markers went down about 60 points. I'll have a CT scan in a week or so and we'll see what that says about liver mets.

Although I am now on the "off" week, I'm still fatigued and have had diarrhea the past two days. Still, this is nothing like what I went through in the second cycle. I gave myself the pleasure of a day off today to do household stuff (ironed 12 shirts!), catching up on some TV meanwhile, and read a bit. I also took what seems to have become my daily nap.

Every afternoon between 3 and 4 PM, my body says to me, "Sleep....Sleep..." So I am taking my own advice and getting a daily nap.

The hand-foot syndrome bothers me but staying off my feet today seems to have helped. Plus wearing these UGG slippers with the fleece lining makes a difference over regular shoes, even with the fancy lined socks. I swear I'd wear them out of the house if it wouldn't look so dorky and if it wasn't still so cold here that my ankles would freeze.

April 03, 2013

Reduced dose, so far so good

Last time I saw Dr G, I asked if he would reduce my Xeloda dose. He did, by 1/6th (one less pill per day). I've felt been much better this cycle. Although I still want to nap every afternoon, I haven't had the other complications of last time (diarrhea, etc.). That's probably why I haven't been blogging -- I am busy living a "new normal" life and haven't found much to write about.

I'm happy that Passover has ended, although it's still one of my favorite holidays. Rik and I went out for my traditional pizza and beer feast last night at Elemental Pizzeria, new to us. We had a really good pizza topped with smoked mozzarella, kale, and cherry tomatoes on an olive oil base, as well as salads and beer. I had to run off to rehearsal afterwards, but came home early enough to have a full family snuggle on the couch (with dog).

Today I had an Avastin infusion. My blood pressure has been off lately, no doubt due to the Avastin, and I don't know how much longer I'll be able to take this chemo booster. We'll cross that bridge whenever.

I put some more plants into the shade garden on Sunday, but when I went to water them today, something had dug all of them up! It might be said dog, or a random critter. I replanted everything and put up a low decorative fence, which should at least keep the dog out.

Now it's off for that nap!

March 28, 2013


Pesach has alternated between quiet and a madhouse.

On Sunday I started cooking, finished everything by Monday around 2 PM so there was plenty of time to take a nap. Our young friends H and A came over to set the table, sweep the floor, and do any ancillary chores. I certainly couldn't have been ready without them!

Our group of eleven at seder was lively, fun and full of ... POETRY! I had asked everyone to please write a poem about part of the seder, and they really stepped up to the task. Here are some samples

From K:
A green shoot breaks through
the packed soil, yearning for
freedom in the spring air,
reaching for the sky, striving
for freedom from the earth.
He wants to be a strong stalk
a beautiful plant
shaking in the summer breeze.
At the peak of his existence, he
gives us his fruit and fades away.
Just a memory on a rainy fall sukkah.

From S:
So now it's time for the story of Pesach,
Four questions, four sons, it's all on the mesa,
Tell the story of Exodus and dab wine for the plagues,
We narrowly missed the Egyptian blades.

(Nice play on words in the last line. The Hebrew word of Egypt is Mitzrayim, meaning the narrow place.)

And one last haiku from G:
Delicious dinner done
Afikomen next we eat
Eliahu comes
I plan to type up all the poems and send a booklet to everyone who participated, along with the photos Rik took.

March 24, 2013

Brain mets are stable

I have n=been deficient in blogging for the past few days.

First of all, my brain mets appear stable. This is the good news from last Monday's scan. Dr G plans to try one more round of Xeloda, although he did agree to reduce the dose by 1/6 (from six pills to five) and will give me an extra week off treatment in April. I may need it, since the leftover fatigue from the last round is still wearing me out.

I continue to have very little appetite in the evenings, and have lost about five pounds (from 120 to 115). Breakfast usually goes well, and lunch too, but somehow I never seem to be hungry until after 8:00 PM.

I am spending today doing some Passover cooking. I just made the chopped liver to my Dad's recipe and after I clean up, will start eggplant caponata, matza farfel "granola" for Rik, and chocolate-almond cupcakes for seder dessert. Tomorrow I will make the roast turkey, chicken soup and knaydlach (matza balls). Everyone else is bringing something.

My plan for Monday is to be done cooking early and have time for a nap. Then I will relax, enjoy seder and let everyone else do the serving and cleaning up. Am I smart or what?

March 20, 2013

Quick tummy update

Immodium seems to finally have stopped the diarrhea, but my tummy is still tender and achy and I have little appetite. I've lost about three pounds. The nurse says that's likely mostly water. Trying hard to stay hydrated.

Yesterday's brain MRI and Avastin infusion left me very fatigued. I slept for several hours after we came home and took a nap after breakfast this morning.

As far as MRI results, I'll see what Dr G says tomorrow. If it's working, he is willing to consider reducing the Xeloda dose so that I don't get slammed with side effects again in the next cycle.

March 18, 2013

Not much change

I still have diarrhea about four times a day, for the sixth day in a row. I spoke to Nurse J today and she recommended doubling the dose of Immodium, explaining that this is the "oncology dose." I took some about an hour ago after a double bout of diarrhea and so far, so good.

I'm also still extremely fatigued. I didn't get up today until almost 11 AM and after a shower and breakfast, went right to the sofa. I slept and dozed for a few hours, then decided to try to function. I am ready to go back to the couch now...

Today is also our eighteenth wedding anniversary. Are we having fun yet?

March 16, 2013

Side effect troubles

I just finished my second cycle of Xeloda and my tumor markers went down 30 points, about 10% (CA 27.29 now 300). However, I developed severe diarrhea on Thursday and had to cancel our planned trip to LA to get together with my family. 

My hands and feet are a bit red; hands more so and tender in the thumb joint despite all the lotion I use. I bought socks with attached liners and BodyGlide to put on the soles of my feet. All of this is supposed to reduce friction on the feet and prevent more soreness.

I am sad to miss seeing my family but relieved that I bought trip cancellation insurance. Lots of paperwork to complete but hopefully will recoup our financial investment in air tickets.

Yesterday I was so uncomfortable I didn't take my last dose of Xeloda (day 14). By today the diarrhea has slowed down in frequency but not stopped altogether. I spent the entire day yesterday on the sofa and am headed there again now, was up twice during the night to use the toilet despite taking a sleeping pill. Today my hands are less red and the hot spots there are recovering. Fatigue is still an issue.

During my first cycle of Xeloda I was uncomfortable starting on day 14 and continuing for almost a week, the week off treatment. On this second cycle the side effects started on day 12 and I don't know how long they will continue.

I'm still hoping for good results from Xeloda and hope I can continue to tolerate it.

March 14, 2013

Numbers are down

As I finish my second cycle of Xeloda, my tumor markers are down by 30 points and the treatment appears to be tolerable so far. My hands and feet are a little red but not interfering with daily activities. I've had a little diarrhea although not to the point that I have to call the doctor. I'm a little fatigued but it's nothing that a short rest on the sofa can't fix.

I am scheduled to have a follow up brain MRI next week to determine if the Xeloda is helping there also.

March 06, 2013

Follow up on feet

Here is a link to the article about Cymbalta reducing the pain of chemo-induced neuropathy:

Cymbalta Helps Treat Chemotherapy-Induced Painful Peripheral Neuropathy
Antidepressant Cymbalta (duloxetine) has been found to relieve the symptoms of chemotherapy-induced peripheral neuropathy, a painful tingling sensation many patients experience after undergoing chemotherapy. The researchers, from the University of Michigan School of Nursing, reported their findings at the American Society of Clinical Oncology Annual Meeting. They explained that Cymbalta was effective for 59% of the patients in their clinical trial.

Living with cancer

Here's a take from a fellow soul who's living with cancer.

Once, Twice, Three Times Malady: My Love Affair With Cancer and Why I Decided to Tell the World
... Some cancers just can't take a hint. You can poison with chemo cocktails, butcher with surgery, burn with radiation, and they still won't leave you alone. You can't get a restraining order against a tumor, I've been told. My cancer can't get enough of me. My cancer keeps coming back. And so I've decided to accept my illness in order to move on with my life -- instead of cure or die, I've chosen truce. I'll keep my life -- and cancer can have supervised visitation rights...

March 05, 2013

Feet update

My feet still seem to be okay - no burns yet from the Xeloda - and I think the neuropathy may have regressed toward my toes. The balls of my feet now seem less numb. Three cheers for Dr G finding that article on double-dose Cymbalta for chemo-induced neuropathy. I've had the neuropathy for more than a year and it is slowly going away.

I ordered more lined socks today and also got an education and free sample of BodyGlide from a sales clerk at Super Jock 'n Jill (how could I could resist that name!). A member of my support group had recommended an anti-chafe powder by Asics, but apparently it's no longer made. This BodyGlide is supposed to provide similar anti-friction support and glides on like a deodorant.

Between the Udderly Smooth cream, special socks, and BodyGlide, I am trying to nip any hand-foot syndrome in the bud before it can get a start.

Today is day 4 of Xeloda round two.