Long time no blog

It's been busy here. Since the transfusion I've had mixed energy, not what you'd expect from getting fresh blood. Twice I've taken dextroamphetamine as per Dr G just to get started in the morning. Today's real (as opposed to decaf) coffee didn't do it for me.

But I did manage to make 25 potato latkes for our block party this afternoon. The house smells like fried oil, as it should during Chanukah. Rik took the selfie below on the first night when it was just us.  You can find my dad's latke recipe here.

On Friday night we went to friends for a latke-fest and I baked a six-pointed "Jewish" star shaped challah. It was well-received with many an ooh and ahh. One guest pointed out that her Swedish grandmother used to make cardamom bread (I fill my challah ropes with cardamom and brown sugar), and that this challah smelled like love to her. What a lovely thing to say!

Bob spent the day at the groomer but it's hard to tell in this photo. Boychik did the same a couple of weeks ago, so both dogs are now dematted for a few months. FYI, Boychik had a small cyst on his back leg that only showed up when his hair was cut. The vet removed and biopsied it and it's benign - no cancer!




And that seems to be all the news of the day! Happy Chanukah, and I wish us all a happy and healthy, joy-filled new year.

Two of three problems fixed

1. A head cold since November 8th;
2. A sinus infection since last week;
3. Anemia (low red blood cell count)

In somewhat different order:

Last week the pounding in my head and pain in my sinuses was clearly, in my experience, a sinus infection of great magnitude. It took me a few days to get a referral and an appointment with an ear-nose-throat doctor (ENT). Yet another one of my ever-growing medical specialists, Dr Burgoyne diagnosed me right away, prescribed antibiotics, and told me to call by Thursday if things hadn't improved. Which they have.

At Wednesday's chemo session, Dr G took a look at my labs and told the nurse I had anemia and needed a blood transfusion. This has happened only once before over these past 12+ years. (I love saying "12+ years!") They type and cross your blood each time and yes, I'm still O+, and give you Benadryl and Tylenol before you get the blood.

On Thursday I received two liters of blood, which took almost seven hours, from 9:30 am to 4 pm. I picked up a mocha on the way to the hospital and noshed on chocolate throughout the day. Plus I had the usual delicious Swedish lunch of soup, tuna sandwich on rye, and chips for the second day in a row. I napped most of the day but did manage to read the newspaper. I drove home and went to bed at 6:00.

Today I felt in recovery mode after being at Swedish two days in a row. I slept in, eventually waking up to shower, change the sheets, start laundry, feed myself, etc. My friend G and I were supposed to go to the local Star Trek convention today, but I lacked the energy. I didn't even have enough energy to walk the dogs, so they have been canoodling with me all day instead and nobody complained. Rik will be home soon and he will walk them. I'll roast a chicken in honor of Shabbat and the fact that my cheeks are now pink once more!

PS I still have the head cold. What can you do? Send me some virtual chicken soup, please.

I've been nominated in Healthline’s 2014 Best Health Blog Contest

I got this in my email today:

Hi Jill,
I’d like to congratulate you on being nominated in Healthline’s 2014 Best Health Blog Contest! You can see the contest here:http://www.healthline.com/health/best-health-blogs-contest

Each year, we recognize and honor the top health blogs of the year with our annual Best Health Blogs Contest. The contest shines light on those blogs that have really made an impact on their reader community and provided them with valuable information and resources to help them live better, healthier lives. We are happy to let you know that you have been nominated in the contest!

The contest started this Monday, December 1st and will run through January 15th. We will award cash prizes (up to $1000!) for the top 3 blogs with the most votes.

Please share the page with your followers and ask them to vote for you. Users can vote once every 24 hours, so please continue to share and encourage your followers to vote!

You can create a badge for you site that recognizes your nomination and encourages those to vote for you here:http://www.healthline.com/health/contest-badges

Please let me know if you have any questions!
Thanks,Maggie Danhakl • Assistant Marketing ManagerHealthline • The Power of Intelligent Health660 Third Street, San Francisco, CA 94107www.healthline.com | @Healthline | @HealthlineCorp

About Us: corp.healthline.com 

(The "vote for me link" is on the upper right.)

Thankfulness

It may seem trite or overused to say what we're thankful for on Thanksgiving Day. After all, every day can provide us with such moments if we can stop to appreciate them. So here goes….

I am thankful for:

• still living well after 12+ years with metastatic breast cancer (this is something of a miracle owed to Dr G, luck and God, not necessarily in that order)
• my loving husband and our close knit families, although those families live on the other side of the continent
• our deeply connected families of the heart, with whom we have found decades of companionship
• the unconditional love of pets (Dunky, Kitzel, Pumpkin, Bobka and Boychik)

I read recently on Facebook about an easy thankfulness practice. Starting on January 1 (or really, any time), label a jar and put it in a visible place in your home. Every day, or as often as you feel so moved, write on a slip of paper some experience that brought you joy. By the end of the year, you will have a jar full of memories to be thankful for, and the opportunity to recreate a year full of joy.

Sniffle sniffle

For the past ten days I've had innumerable cups of tea (the hot water just came to a boil now). Plenty of Tylenol. So many hours on the couch or in bed. And yet this cold, or whatever it is, remains stuck with me. Plus last week's Avastin gave me nosebleeds, and the Abraxane fatigue is on top of everything else.

In these few days before the Thanksgiving holiday, I know I can't get in to see Dr G (I tried last week). So for what I hope is a minor upper respiratory thing-y, I will try to call my primary care doctor and see a) if she can see me, and b) if there's anything she can do. If Dr K is too busy I may have to ride out this cold-or-whatever-it-is until I see Dr G next week.

Not looking for advice here; just "pissing and moaning" about feeling yucky. I hardly ever catch a cold, and certainly not one which lasts this long.

My 55th birthday

Today I celebrated my 55th birthday with my hubby and dogs, and five very close friends who have all known me for twenty years (or longer, in one case). We ate too much chocolate, drank a little too much champagne, and talked for several hours.

One birthday card quoted Marcel Proust. His words belong to everyone in the world.

Let us be grateful to the people who make us happy.
They are the charming gardeners who make our souls blossom.

To friends near and far, l'chaim -- to life!

This is how fatigue looks

From Jim Davis's Garfield on November 10, 2014

Done with acupuncture

Dr Rudolph and I agreed that while I am in a treatment that has a side effect of neuropathy, the acupuncture is simply trying to keep my feet at their current (or perhaps a bit reduced) level of discomfort. It's kind of expensive to continue just to keep this holding spot, so I have decided to stop acupuncture for now. If the neuropathy progresses, or if I change treatments, I can look at starting acupuncture again.

In the meantime, I'll continue with gabapentin, L-glutamine powder, and the occasional use of 5% lidocaine cream, which is available over the counter.

Tumor markers down

I saw Dr G last week and after repeat scanning of my liver and brain, it appears that my mets are stable and my tumor markers have dropped another 50 points.

The potential infection in my port line may or may not exist. Last week I saw an infectious disease specialist who is not convinced that I have an infection. He wants me to stop using my port for blood draws a few days before using it for chemo, to give anything that might be brewing a chance to heal. So I will go early to chemo, have my blood drawn for labs, and spend an extra hour in Ballard waiting for results, instead of having a phlebotomist stick me in the arm, and then run out of usable veins in a matter of weeks. That's why I got a port in the first place. Lymphedema in one arm means no needle sticks; crappy small veins in the other arm means I prefer to use the port. And no one wants to have to stick me in the feet or in the neck, the best other options. Uggh….

Back for more chemo tomorrow!

Acupuncture

I may not have blogged already about treating my neuropathy with acupuncture. Someone in my support group mentioned this as a viable alternative and I decided to check it out. I'd tried acupuncture the second time I was on Abraxane and it did seem to give some relief. (Unfortunately, Dr G tried Taxol and it brought the neuropathy in my feet back, raging, after only one dose.)

This time I am seeing Dr Gregory Rudolph at Swedish Pain and Headache Services. He's an MD as well as a licensed acupuncturist.

The treatment goes in six visits - four that are one week apart, and the last two which are two weeks apart. He uses acupuncture needles plus mild electric stimulation.

After the first visit, I didn't notice any difference.

On the second visit, in additional to needles on the top of my feet and shins, Dr Rudolph placed one needle in the ball of each foot and a small, gold stud in each ear. Evidently the ear is a microcosm of the body and this was supposed to help with pain management. I don't know which point was responsible - the ear or the ball of the foot - but I could barely walk that week and the pain/numbness/tingling felt out of control. I was miserable.

I told Dr Rudolph about this on my third visit. I wanted to avoid the ear studs, since placing them was painful to me and I hadn't brought along my lidocaine cream. We agreed to try it the next time with me using the cream. He did not place any needles on the bottom of my feet.

For the fourth visit, I was prepared and used the lido cream about 30 minutes before my appointment. Dr Rudolph placed two gold studs in each ear, but hadn't told me in advance where the second stud was to go, so that area was not treated with lido cream. Given my lack of discomfort with the numbed ear, he agreed that the lido cream worked and put the second stud in a spot that would also work for pain management and where I had rubbed in the lido cream. Again, he did not put needles on the balls of my feet.

That was last Thursday. All four gold studs are still in place. My feet don't feel any different. Dr Rudolph had asked if my energy felt different. Since I spent all of Friday and much of Saturday in bed, I can't say that I have better energy. Different - as in fatigue - just not better.

I start another cycle of Abraxane tomorrow and will get acupuncture again on Thursday. We'll see how it helps!

PS

The interventional radiology PA says my neck looks improved. I will see Nurse Jacque this Friday so she can access my port before my CT scan and MRI. She can check (and maybe Dr G too, although he doesn't officially see patients on Fridays). He will give me the scan results next Monday, so I'll have another few days to see if the port line continues to look better after I finish the antibiotic.

PPS My blood pressure has been high since Monday a week ago with my most recent dose of Avastin. Dr G now says that since my BP hasn't gone down very far, it will also be my last dose of Avastin. I've had a long run with that drug, it's helped, but eventually things do stop working.

I think they call it entropy.    : )

What's up

Now that the Jewish fall holy days are finished, I feel as though things are settling down. Except that last week I was diagnosed with an infection in my port line.

10-21-2014 (bad selfie)

(actually 10-13-2014)

The line had been reddish for a few days but the nurses at Swedish urged me to contact Interventional Radiology and have someone else see it. I went in the next day, the IR PA (physician's assistant) prescribed oral antibiotics, told me to come back in a week, and if it hadn't cleared up sufficiently, he'd put me on intravenous antibiotics.

Yesterday the infusion nurses all agreed it looked better. Personally, I can't tell. But I will go back to see the IR guy tomorrow and eventually write an update.

Metastatic Breast Cancer Awareness Day

Today is Metastatic Breast Cancer (MBC) Awareness Day. 

We invite you to view our MBC awareness video at metavivor.org.

Sincerely,

METAvivor Research and Support

Visit METAvivor.org

From one holiday to the next

It always feels as thought autumn is full of holidays and holy days. From starting a new year to the Great I'm Sorry (aka Yom Kippur) and then sliding into the harvest fest of Sukkot, it's one celebration after another. Unless you have metastatic cancer.

Ringing in the new year was fun and spiritually satisfying. Yom Kippur was more challenging: the rush to eat dinner at 4:30 pm in order to be at synagogue by 5:45 pm; the long 25 hour fast; the inner cleansing and asking for forgiveness; remembering those we've lost; and finally a great hullaballoo at the end when we're practically dancing in the aisles during the final shofar blast.

The break-fast felt quiet after so much energy spent during the day. The next morning, Rik put up our sukkah (temporary shanty) with help from friends, and more friends came over to decorate it. My sukkah, now in it's 22nd year, looks like a lifetime of memories from our twenty years of marriage and even before.

But this Abraxane is beginning to wear me down. On Monday I felt fine, but got hit with diarrhea immediately upon arriving home. Tuesday I could barely get out of bed; it was just as well that Rik needed the car all day. Wednesday and today have been better but not terrific. I expect next week's chemo to hit me as hard. That will be the third dose in this second round.

So now I'm going to try to relax, cuddle with the dogs, maybe watch some TV or read a book. I'm already in my jammies.

Pinktober has begun

I'm not in the mood for a pink washing rant right now. Just PLEASE remember that if you feel pressured to buy something to support "breast cancer awareness" or other vague touchy-feely-good cause with no details, here are some things to keep in mind:

Before You Buy Pink

Breast Cancer Action coined the term pinkwashing as part of our Think Before You Pink® campaign. Pinkwasher: (pink’-wah-sher) noun. A company or organization that claims to care about breast cancer by promoting a pink ribbon product, but at the same time produces, manufactures and/or sells products that are linked to the disease.

Critical Questions to Ask Before You Buy Pink

1. Does any money from this purchase go to support breast cancer programs? How much?

Any company can put a pink ribbon on its products. The widely recognized pink ribbon symbol is not regulated by any agency and does not necessarily mean it effectively combats the breast cancer epidemic. Some products sport pink ribbons to try to communicate that they are “healthy” and don’t contribute to breast cancer, such as a number of natural health and beauty products. Other products have a pink ribbon in order to indicate that the company supports breast cancer programs even if the company’s contributions are not tied to the purchases of the specific product bearing the ribbon. Still other companies give a portion of an item’s cost to a breast cancer organization but may require further action on the part of the consumer for the donation to be realized. Can you tell how much money from your purchases will go to support breast cancer programs? If not, consider giving directly to the charity of your choice instead.

EXAMPLE: In 2010, Dansko shoe company sold pink ribbon clogs. Consumers likely thought that a portion of their purchase of pink ribbon clogs went to a breast cancer program. However, purchase of the pink ribbon clogs was not connected to Dansko’s donation—none of the portion of the sales went toward their already set donation of $25,000 to Susan G. Komen for the Cure. No matter whether or not you bought the clogs, their donation was the same.

2. What organization will get the money? What will they do with the funds, and how do these programs turn the tide of the breast cancer epidemic?

Many companies that sell pink ribbon products and donate a percentage of each sale to breast cancer programs fail to indicate which of the many different breast cancer organizations will get the money. Furthermore, the consumer is left to trust that these organizations are engaged in work that is meaningful and makes the greatest difference. If money goes to “services,” are they reaching the people who need them most? How do screening programs ensure that women can get treatment? And how do breast cancer awareness programs address the fact that we already know that breast cancer is a problem and that action is needed in order to end the epidemic? Does the money go to truly addressing the root causes of the epidemic, like social inequities that lead to women of color and poor women dying more often of breast cancer, or environmental toxins that are contributing to high rates of breast cancer? Before donating, check the recipient organization’s website to make sure that its mission and activities are in line with your personal values. If you can’t tell, or you don’t know what the organization does, reconsider your purchase.

EXAMPLE: The KISSES for a Cure music box is advertised by its maker, The Bradford Exchange, online with the following: “A portion of the proceeds from this music box will be donated to help fight breast cancer.” It is not clear what breast cancer organizations would benefit, how much money they would receive, and what programs or work would be funded by the donation.

3. Is there a “cap” on the amount the company will donate? Has this maximum donation already been met? Can you tell?

Some companies that indicate that a portion of the proceeds from the sale of a particular pink ribbon product will go to support breast cancer programs put an arbitrary “cap” on their maximum donation. Once the maximum amount has been met, the company may continue to sell the product with the pink ribbon without alerting customers that no additional funds will be donated to breast cancer organizations. This means you may be buying a product for which none of your purchase price will go to a breast cancer cause but only to the bottom line of the company.

EXAMPLE: In 2010, Reebok marketed a line of pink ribbon emblazoned footwear and apparel at prices ranging from$50 to $100. Though it heavily promoted the fact that some of their pink ribbon product sales would be donated tothe Avon Breast Cancer Crusade, they set a limit of $750,000, regardless of how many items were sold, and therewas no mechanism in place to alert consumers once the maximum donation had been met.

4. Does this purchase put you or someone you love at risk for exposure to toxins linked to breastcancer? What is the company doing to ensure that its products are not contributing to the breastcancer epidemic?

Many companies have sold pink ribbon products that are linked to increased risk of breast cancer. We believe that companies that are profiting from building a reputation based on their concern about breast cancer have a responsibilityto protect the public from possible harms when scientifi c research indicates that there is a risk or plausible reason forconcern. Some of the earliest cause-marketing companies were well-known cosmetics companies that continue to sell cosmetics containing chemicals that have been linked to breast cancer. Even car companies have gotten in on the action and sell cars that emit toxic air pollutants in the name of breast cancer. In considering a pink ribbon purchase, does the product contain toxins or otherwise increase our risk of breast cancer?

EXAMPLE: In 2011, Susan G. Komen for the Cure commissioned a perfume called Promise Me that contains unlisted chemicals that are regulated as toxic and hazardous, have not been adequately evaluated for human safety, and have demonstrated negative health effects. Although Komen said they would reformulate future versions of the perfume, without official adoption of the precautionary principle, there is no guarantee that future versions would be better.

If you have doubts about your pink ribbon purchase after reviewing these critical questions:

1. Take action to demand pink ribbon products don’t contain chemicals linked to breast cancer.
2. Write a letter asking the company to be transparent about its donations.
3. Consider giving directly to a breast cancer organization whose work you believe is most essential to addressing the breast cancer epidemic.

Jill again: I have removed the final paragraph because it asks specifically for donations to Breast Cancer Action. I am not opposed to this organization, but I want all of us to donate where we feel our dollars will be best used.

So please: don't buy the pink crap for me. Or for you. Instead, make a donation to a worthy cause. Your donation helps fund research. New treatments keep me and others like me alive longer with good quality of life. If you care about me or others with stage IV breast cancer, giving money is the way to go.

Here are some of my favorite breast cancer organizations that you may not have heard of:

Gilda's Club Seattle

Swedish Medical Center

Breast Cancer Action

METAVIVOR

Thank you.

A happy new year starts off

I meant to post something significant if not downright mystical last week as the new Jewish year approached. Instead, I made chopped liver. And ginger cake. And plum kuchen from my friend's miter's recipe. And 100 travados.

I'm a practical kind of person, after all, so a quasi-mystical post wouldn't have seemed right somehow. Instead, here is my dad's recipe for chopped liver, a Jewish delight that resembles a rough pate de fois gras only made from chicken instead of goose livers.

Below is the chopped liver technique. Video by Rik Katz; fun also provided by Bob and Boychik. Shana tova umetuka veshalom - wishing us all a new year of joy, sweetness, good health, and peace around our world.

Chopped Liver Video Part 1:

Chopped Liver Video Part 2:

Chopped Liver Video Part 3:

Chopped Liver Video Part 4:

Chemo update

I finished the third dose of Abraxane last week and this morning I noticed that my hair has started to fall out. Right on time, I suppose. I made an appointment for tomorrow morning with the hairdresser to buzz cut my hair and trim my wig. I may want to buy a second wig in a slightly different color. My wig, which cost a lot of money and is artificial, is much darker than my hair color now after a summer in the sun.

Other than hair loss, the side effect from Abraxane that bothers me is the increase in neuropathy in my feet and its beginning in my fingertips.

My fingertips aren't painful, just a little sensitive. The neuropathy hasn't spread further down my feet; it's still confined to my toes, but the intensity has sharpened dramatically. I will try to get in to see an acupuncturist.

My feet hurt so much most nights that it can take me about four hours to fall asleep naturally. If I need to be up and active early in the morning, I take Ambien and hope that it gives me a full night's sleep. I just don't want to be dependent on it. So I'm learning to get by with less sleep.

I'll try to remember to post a photo tomorrow after my buzz cut. Hopefully the hairdresser will leave a little hair, maybe half an inch in length, so that I'll look trendy instead of bald.

And I am so thankful that I had my eyebrows tattooed a couple of years ago! Now I won't see a space alien, or a balding brother, when I look in the mirror.

Still good

Haven't written in a week but all is good so far. I had the second dose of Abraxane and feel fine, haven't lost any hair yet.


In the meanwhile, here is a photo of one of my orchids blooming AGAIN! This is at least the third time for this plant. I think that makes me a successful orchid mama, just like my friend S's mother. This picture is in Jackie's memory, who taught me how to care for orchids.

Meanwhile, while we were in Bulgaria...

Mentally going back to Bulgaria now --

We began our second to last day still in Pazardzhik. In the morning T our guide and teacher gave us two hours to ask her questions, listen to her demonstrate different styles, and talk to us about the importance of vocal technique.

This is what I recall from T's talk: In the days before there were large state music schools, people simply sang the way they sang, without much thought for how it sounded and what singing in this way might do for their vocal chords' health. They were singing for pleasure, not for recording etc.

As training singers began to learn proper vocal techniques, more and more began to move traditional songs and styles into proper placement in the throat. They learned to use their skills to reproduce the raw, village sound without blowing out their voices. T said that this is what keeps her singing in her large range at the anne of 54. (She and I are only a few months apart in age but of course have lived very different lives.)

T spoke at length about how to increase one's vocal range and keep it healthy at both the top and bottom ends. As a soprano, I loved listing to her demonstrate how to maintain and grown the upper end of her voice while not losing the lower end.

Later that afternoon we drove the nearby village of  Patelenitsa for a local festival. This small town is something of a suburb of Pazardhik but has it's own population and customs. Rainstorms interrupted the planned start of the festival, but after a few hours of drying the microphones with hairdryers, they started. A woman born here but now living in Calgary was home for a visit and wanted to meet the American singers. She introduced me to her mother, a member of the local choir.

RIGHT The local choir singing in the rain with their accompanist whose accordion is shielded by the umbrella-wielding conductor.

Abraxane again

Yesterday I had my first dose of Abraxane in this third round of that chemo. Today I feel fine, maybe had the tiniest queasy tummy last night so took some Zofran just in case.

However, my day at Swedish was too long. I arrived at 130 on time, at 230 a nurse came out with the consent form which I was supposed to sign with Dr G but of course we didn't do this since I've had Abraxane twice before.

Got called back to a chair at 245. Then my port wouldn't give any blood return no matter which way I positioned myself or coughed. At 3:45 I sent Rik home to relax after his first day at school, feed and walk the dogs, etc. I received a dose of alteplase, a drug which can unclog a stuffed up port. An hour later, thankfully good blood return! In the meantime I ate a soggy egg salad sandwich from the bagged lunches and enjoyed a cherry turnover Rik brought up for me.

By 4:45 pm I was so tired of waiting that I asked the nurses to call Dr G's office and get permission to skip the Avastin, which would have added another hour to the total infusion time. Nurse Jacque called out to him in the hallway, and he said "Okay, but she can go home!" Creative thinking nurse Mary Beth called the pharmacy since the Avastin was already mixed (i.e., ready to give to a patient) and they assured her that they could use it the next day.

I was done with the pre-meds (like I needed steroids at this point, I was so wired), Abraxane and Faslodex. I talked with my mom for a half-hour, read some more, and tried to relax. Rik met me at 6:45, we went home, and by 10:00 I was ready to eat some leftover chicken. I was in bed at 11 with all my drugs to relax me and felt fine today.

I take responsibility for my port causing a longer visit but for a two hour infusion to take five hours seems excessive to me. After my four appointments at Swedish's First Hill Cancer Institute, assuming the Abraxane works well for me, I will schedule all my ongoing infusions at the Ballard campus, which has a much better nurse:patient ratio.

Update re Dr G

I saw Dr G a few days ago and learned from the scan reports that my cancer has stayed the same in my brain, but the mets in my liver have grown significantly. My tumor marker also went up by 100 points. So it's definitely time to start another chemo. As Dr G put it, Xeloda clearly worked on my brain, but not so well on my liver. The PET/CT scan also showed a new metastasis in my left elbow, as persistent pain there indicated to me night be the case.

So I start Abraxane with Avastin this week, once a week for three weeks in a row. Somehow we fit Aredia (every three months) and Faslodex (monthly) into the schedule as well.

I feel good, and hope that next week's chemo will start to make a difference quickly!

12th metsiversary

Today is the twelfth anniversary of my diagnosis with metastatic breast cancer.

It's the only day in which I let myself blow a Bronx cheer / wet raspberry / mouth fart to cancer. Nyah-nyah! It's been twelve years and I'M STILL HERE!

The rest of the year I abide by the deal I made long-ago with my cancer: it could stay with me as long as it was quiet, because (sadly for both of us) if I die, it dies too. Read this blog post for more on the dream that started my deal.

I've planned all kinds of ways to celebrate my metsiversary over the years. Some were large parties; others were intimate gatherings -- but all were with friends and even occasionally with family. It's the kind of event that lends itself to celebrating with people. Tonight, however, is also a friend's very significant birthday, and we've been invited to celebrate with her. I think she'll understand if my toast to her also includes a nod to me.

My favorite toast is the one which my friend K graciously loaned to me so many years ago:

"May all your joy be true joy,
And may all your pain be champagne!"

If you want to join my celebration, then feel free to invite your friends and family to eat some chocolate and drink a glass of bubbly with you. Together we could be a global phenomenon!

Back to Bulgaria (metaphorically speaking)

It's time to write more about Dunava's trip to Bulgaria.

Upon leaving Kyustendil and the "Silver Buckle" festival, we took the long drive to Pazardzhik. We stayed in the lovely Hotel Primavera, a small but seemingly new pensione in the town center. I was so tired from the previous days that I stayed in the hotel and did not attend either the afternoon workshop with our hosts, Ensemble Pazardzhik, or dinner with the rest of the group. The rest did me a world of good, because the next day we could choose either a half-day trip to nearby Plovdiv or the same amount of time on our own. Several of us chose Plovdiv, even though it was difficult to get back on the bus again. Thankfully our driver N is a man of excellent good humor.

Sundial on mosque, Plovdiv

Restored Roman vomitory, Plovdiv

Plovdiv is divided, like Jerusalem, into a very old city and a new city. The highlights of the old city are the many restored ruins, which feature a complete Roman amphitheater still used for performances. Our small group explored the tourist part of the old city. New shops, cafes, and restaurants abound. Except for the public toilets, where a squat toilet and Western-style toilet sit privately side by side. To use either one, you have to "pay" the lady outside 50 stotinki, which regretfully doesn't make the toilets any cleaner.

Restored Roman amphitreatre, Plovdiv

We climbed up the cobblestone streets and looked in almost every antique shop to assist J in her hunt for antique jewelry and R for her search for authentic clothing. At the top of the hill we stopped for a light lunch overlooking the amphitheater.

Upon our return to Pazardzhik, I joined everyone for the afternoon workshop, during which I tried to pick up the four songs they had begun the day prior. We enjoyed a yummy dinner in an outdoor restaurant. Unfortunately, what felt like every mosquito in Bulgaria joined us and nibbled on D and I for their dinner. After too many bites to count, I headed back to the hotel.

On the way I saw a most beautiful cocker spaniel, enjoyed yet another conversation in French with M, his maman, and picked up a few more mosquito bites.

M and her English cocker spaniel David, Pazardzhik

Cancer update

I really promise to write more about Bulgaria, especially a topic on my mind for about two weeks. My brain calls this subject "A Tramp Abroad," in humble imitation of Mark Twain. But first a cancer update.

I saw Dr G today for the first time in a month. My tumor marker has climbed 50+ points since my last treatment. Since this big a jump is no longer just "noise" to him, Dr G thinks it is time to change treatment. He would like me to try a taxane again because Abraxane worked so well, until increased neuropathy in my feet began to make me stumble when walking. I reminded him that even one dose of Taxol caused my neuropathy to flare out of control.

We compromised on trying Abraxane at a lower dose than last time. I suggested that first he order a PET scan and brain MRI, so that I start the Abraxane with fresh data. I will see Dr G after those scans, get the results, and then we can move forward. I truly love, admire and appreciate how that man listens to me!

In the mean time, I am not to restart Xeloda or methotrexate, but to continue Aromasin daily, and Avastin (every two weeks), Faslodex (once a month) and Aredia (every three months).

According to www.chemocare.com, the following side effects are common (occurring in greater than 30%) for patients taking Abraxane:

Low blood counts (your white and red blood cells may temporarily decrease which can put you at increased risk for infection and/or anemia)
Hair loss
Nausea
Abnormal ECG (electrocardiogram)
Peripheral neuropathy (numbness and tingling of hands and feet)
Arthralgias and myalgias, pain in the joints and muscles (usually temporary occurring 2-3 days after Abraxane, and resolve within a few days)
Weakness and fatigue
Increases in blood tests measuring liver function (these return to normal once treatment is discontinued)

Last time for certain I experienced peripheral neuropathy, hair loss, weakness and fatigue; perhaps now blood counts and nausea (I can't remember and anyone can search my blog for that information). Who knows what will happen this time? My wig and scarves are ready, just in case...

Migraine

I think my jet lag is expressing itself as migraines, so I could not blog yesterday after checking the backup of email from when I was away. If not today, I will write the next day.

Otherwise I feel well, but I've never had a migraine before and it's extraordinarily painful, even for someone with my high pain tolerance - perhaps a 7 on the 1-10 scale (with my broken leg continuing as my personal "10").

I am getting labs drawn today for tomorrow's Avastin, then hope to attend my support group after. Rik is driving me, as the migraine seems to be triggered by light and the past few days have been very sunny in Seattle.

A friend gave me good advice on coping with migraines. Stay in a cool, dark, room (I'm wearing an eye shade), put a cold cloth over your head. I may try a "Well Patch," since it's an OTC item.

Read here for more on migraines.

Home!

I am home after two weeks in Bulgaria with Dunava. I promise to post more tomorrow!

Touring and Kyustendil

YThe past few days we've been busy with touring. This is the unglamorous side of even our tiny bit of showbiz. Wake up, get on the bus. Stop for gas, get on the bus. Arrive at new location. Short break, then lessons and/or performance. Dinner, sometimes very late with musicians, sometimes just us. Go to sleep. Repeat. 

After Bansko we want to Kyustendil. This is the performance sponsored by the USArtist grant (https://m.facebook.com/story.php?story_fbid=10152614132464017&id=699319016). 

After arriving in Kyustendil we had been invited to march in the parade with the other performers. J and I were again too tired to march, but the others had fun. Baby E makes us friends everywhere we go!

Our set was fourth in the lineup after groups from Bulgaria, Macedonia and Azerbaijan. Such glorious costumes, dancing and singing! It was my idea of heaven and brought back sharp memories of performing with Zivili in Columbus Ohio and with Radost in Seattle. 

Dunava was so well received, with  especially big applause for a Shope quartet featuring Ramona's Bulgarian style "yodeling."  

We went early to bed because next day we were back on the road. Dina received a silver pufti (belt buckle) and certificate of appreciation presented by the vice mayor. 

Bansko

We arrived in Bansko after stopping at an outdoor market with homemade honey, jams, beans (don't ask me why) and some gorgeous mushrooms. Jody and I rested and then both went to the workshop featuring a 14year old baritone with an amazing voice. 

We learned two songs and then went to dinner when I finally was able to order lamb. And fries. Not as good as the chips a few days ago. 

I walked back to the hotel and missed the music but had another lovely adventure. I got lost eating my daily ice cream and asked three older women where our hotel was located. They offered to walk me there (all this in Bulgarian and pantomime). 

One lady spoke about the same amount of French as I do: call it high school francais. Victoria was born here in Bansko. We chatted with great effort of memory on both parts. She asked how old I am (54) which she did not believe.  "You must be 25! No? But your face shines like light!"  Such a lovely compliment. 

When we caught up to the other ladies, we all introduced ourselves and Victoria explained about the crazy American singers from Seattle. I had to dig out my music to share with them and sampled Kaeramfilchetu and Izgryala e Mesechinka, which Yordana knew and sang with me. We were all very happy, me for finding them and them I think for befriending me. No doubt they will done out on this story as much as I. 

Selfie of Victoria, Yordana, Maria and me

Random pics from BG

 

For Jewish friends: Hila and I at the "kotel" in Kotel

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Desislava my music teacher. 

Chocolate ice cream face

Roommates

Music school

Yesterday we arrived at the music high school T attended. It's in the mountains of Kotel, a small village in the foothills. 

After we arrived I was exhausted from the earlier part of the day: shopping, lunch in an outdoor cafe and hot, hot sun. A shower and short nap helped and I was able to attend the group lesson. We learned a really beautiful "Happy Song."  

Our driver had a mandated 24hour break, so most of walked down the winding road to a lovely restaurant. We sat outdoors by a waterfall. A delightful setting. Sadly the menu was confusing. 

M thought she ordered sea scallops, French fries and hot tea. What she got was a bottle of cold iced tea, Saratoga-style potato chips (cut thin and fried but with a soft potato center) and pork scallopiini. But we laughed it off and it made a funny photo. 

We returned late, after midnight, and I barely woke up in time for coffee and the special Kotel bread - so yummy! Then I had a private lesson with one of the singers working with Dunava.

Lunch is in an hour and I am going to nap until then. 

J and I at a scenic view near Kotel

On the bus

We're driving now from Burgas to Khotel (no not the Wall in Jerusalem). 

Yesterday we left Varna. I enjoyed a walk on the beach while the others were singing for BG tv. I can't sing soprano at 9 am!

The long afternoon drive was broken by a surprise lunch at a family home. The owners were so welcoming to us and fed us a lovely traditional meal. Read more from Ramona on Dunblog (http://www.dunavlog.blogspot.com). 

I learned that the evening performance was late and dinner would be even later in a town 45 minutes drive away.  So J and I stayed in Burgas. I had excellent pizza for dinner and got a good night's sleep. 

Leaving for Bulgaria

Just wanted to send a quick message that Dunava is leaving for Bulgaria on Monday morning! We hope for a safe trip, lots of great music, and an even more authentic Bulgarian sound.

I will do my best to blog from this account and you can also follow Dunava's adventures at Dunablog.

Dinner at the Varimezovi home

First day in Bulgaria

The plane flights were okay but long. We landed safely in both Frankfurt and Sofia. Four month old baby E is the best mascot! She's a happy baby and everyone wants to hold her. Tzvetanka and Ivan met us at the airport.

Sofia is part Soviet era old midrise apartments with baskets of flowers on each windowsill, peeling paint, plenty of graffiti and part new glass business towers. It reminds our three Jewish Dunavites of Israel in the 70's and early 80's. You have to press a button in the hall to turn on the lights. The pillows and mattresses are flat and lumpy. But each unit has wireless internet.

The people are warm and friendly. Tzv and Ivan prepared dinner for all of us: the freshest tomatoes in Shopska salad, two kinds of moussaka, fresh fruit and home made slivovitz for several toasts. I taught them to say L'chaim! We sang a few songs for sheer pleasure.

After dinner Hila and I walked to an ATM so I could get cash, then spelled the Cyrillic business names on the door fronts. Good practice !

The apartment holds all 10 of us. A bottle of insect repellent opened in my toiletry kit and soaked everything in it. I'm trying to air it out. Jody and I napped before dinner and slept all night.

It's about 7 AM and I hear sounds of activity in the kitchen. Time to get up!

Resting up or recovering?

Ever since Rik came home I have spent a lot of the last week sleeping or napping.  I think I am making up for lost sleep (dogs waking me every morning at 5 am) while Rik was away. Or it could be regular Xeloda/Methotrexate fatigue. I am looking forward to having the rest of the month off of chemo!

My tongue is much better but lately my BRONJ spot has been bugging me. I am going to try to see my dentist this week. I've had multiple infections in this spot in my mouth and I don't want to go to Bulgaria already sick with something.

Speaking of, I feel almost ready to depart. Still some medical stuff to take care of (unbelievable! I've been doing this for weeks now but I keep forgetting things.). Money issues all squared away, packing list started, borrowing a mid-size suitcase from a friend, etc. Just have to learn the last two songs…..

The most prolific raspberries in Seattle

And this is only one day's haul, about four pints.

Send Dunava to Bulgaria

 

There are only three more days left if you want to help Dunava get to Bulgaria. Our web campaign Send Dunava to Bulgaria closes on Sunday June 29 at 11:59 PM PDT. We're at 73% of our goal. Please feel free to share the link and tell your friends. Even clicking through to visit the page helps Dunava gain visibility. Thank you again to all those who have donated!

Post-Xeloda stuff

I finished my recent round of Xeloda last Saturday and by Monday the side effects kicked in hard. Painful numb feet (neuropathy and Hand-Foot Syndrome), cracked and painful hands (Hand-Foot Syndrome again), fatigue, diarrhea etc. Plus Rik is away and so I have picked up all his daily chores in the meanwhile, such as waking up at 6 AM to feed the dogs, walking the dogs twice daily, and more. It makes me more tired than usual, and perhaps that's why I feel the Xeloda after-effects more than usual.

I had my last major infusion (before going to Bulgaria) of Avastin, Aredia and Faslodex yesterday. It took more than three hours plus the time I waited for Dr G to sign the orders. (I do think he's the best, but getting the details done while I wait just frustrates me.) Then of course I had to fight rush hour traffic, feed and walk dogs. By 6 PM I was crashing. Good thing I predicted this would happen and moved choir rehearsal away from here so that I could sleep.

Rik texted me at 1 AM this morning. (I don't think he read the time difference correctly.) But it was our first chance to "talk" since he left. Even though texting is no substitute for a real conversation, we got caught up a bit.

E B, phone home!

I know you're out there….Hope you're feeling better and better every day and that you'll be back in touch soon. Wishing you a full and complete healing of body and soul.

6th Yahrzeit

Today is the sixth yahrzeit (annual memorial) for my father, may his memory be for a blessing. Last night I lit the 24-hour yahrzeit memorial candle, which is still burning as I type now.

Rik woke me at 6 AM this morning so that I could get to morning minyan (service) on time. I arrived by 7:10 and my friend D was already there. We had a minyan of 10 people by 7:45 or so. As the only Kohen present, I was offered the first aliyah. I'm sure my dad would have been proud, since he's the one who taught me how to do it. I remember my first summer at Camp Tel Yehudah. I had been offered an aliyah and I had to call home "collect" to get my correct Hebrew name from my parents. (You have to be old enough to remember what "calling collect" means.)

D ended up saving the minyan. No one had prepared the Torah reading, and when the man leading the services asked if anyone could sight read the portion, D said yes, if she could use a chumash (a printed book of the Torah). She did a marvelous job, leyning (singing) the trope (cantillation) in the lovely melody she learned from a friend. Imagine sight-singing a new piece of music, in front of other people, when the words are in another language, and you'll understand the feat D pulled off today.

In our congregation, at daily minyan, those observing a yahrzeit have the opportunity to hold the Torah scroll while reciting the prayer El Maleh Rachamim (God full of compassion). I held the Torah, sang El Maleh for my dad, and then told a short story about him:

When we were on a family trip to California in the mid-70s, we drove from San Francisco to Los Angeles. ALong the way we stopped at San Simeon for a night and stayed at a motel on the beach. We drove up and father said, "Take off your shows." We looked at hime like he was crazy. "Take off your shoes!" OK, we took off our shoes. Then, before checking in to the reception desk, he walked my mom, my sister and I to the edge of the beach, and told us to dip our toes into the Pacific ocean. That, he said, made us cross-country travelers. (As New Yorkers, we had of course been in the Atlantic ocean many times.)

It's especially sad to remember my father this year, when Father's Day and his yahrzeit coincided. Zichrono l'vracha, may his memory be for a blessing to all who knew him.

Shimon Shir ben Zalman haKohen uMiryam, 1985

Just feeling a little tired

I started round 17 of Xeloda this past Sunday. My tumor markers are up a bit, but Dr G says "that's just noise." Meanwhile I'm still taking my chemo cocktail and we might change to something else later this summer.

So far tithe Xeloda is making me feel a little tired, as usual. The Hand-Foot Syndrome + neuropathy + fatigue usually have me on the couch by 4 PM. Today the plain chocolate birthday cake for Rik and the walnut-black pepper biscotti he asked for are still in the oven. So my nap will be delayed.

It's not actually the sleeping so much, although I did take a major nap on Monday -- fell asleep around 4 PM, woke up at 9:30 PM when Rik said "Jill, it's time to go to bed," and after eating a leftover slice of pizza, got into bed at 11 PM, took an Ambien, and slept until 11 AM. That's not my usual pattern, when you hit the wall, you hit the wall. Hard.

I will fold clean laundry, make the bed, finish the cake in time to drive to G and D, and maybe snooze in the car. Rik's not home yet.

Feeling better and better

It's been a week full of feeling (mostly) well and energetic. I actually cooked every night, real food, not just pasta. I only seriously crashed on one afternoon. I led the Yizkor memorial service at synagogue for Shavuot, and was powerfully moved. The next day I realized it was the 25th anniversary of my friend Charisse's yahrzeit.

While I was out buying groceries yesterday, I went through the U Village's sidewalk sale and found a great pair of sandals to wear to Bulgaria and a red dress to wear on stage. Later we sat down to Shabbat dinner with 11 friends who ate everything! (Of course, they brought half the meal.) And today I led musaf services and sang one melody I learned from Charisse. That was a powerful moment too.

On the other hand, my feet continue to hurt from Hand-Foot Syndrome, I'm still trying to figure out travel stuff (although I did apply and was approved for the Bank of America travel VISA card, 0% APR for the first year, no annual fee, chip and sign, and NO FOREIGN EXCHANGE FEES! I should really make a travel to-do list.

And on the other hand,  as Tevye would say, the weather is sunny and warm, my garden is thriving even if I haven't weeded in weeks, and I came home from synagogue to find Rik asleep in the hammock with Boychik the dog. Some things are just perfect; wish I'd taken a photo.

Going to Bulgaria

As many of you know, for almost 10 years I have been singing with Dunava, a Balkan womens' folk choir (http://www.dunava.org). Singing with Dunava is the culmination of my many years of folk dancing and singing. Now I have my first opportunity to travel to Bulgaria and learn from master musicians there.

Since I was 16, I have fallen in love over and over again with the music of the Balkans, specifically that of Bulgaria, with its tight harmonies and powerful sound. In Dunava I found a group of extraordinary women with whom it is my pleasure to sing. They have taught me so much over these past 10 years. As my friend G said when we were in the recording studio one day last year, "When I met you, you were a dancer who could sing. Now, you're truly a singer."

I'm writing today asking you to please check out our IndieGogo campaign and consider supporting Dunava. This trip will improve how we sing, will give us new material to bring back for workshops and concerts (in the Pacific Northwest) as well as influence future CDs and projects which will make their way around this country and the world. 

Any amount of support would help us reach our goal.

If you choose not to support Dunava, please click through to the Indiegogo page anyway. That simple act helps us gain more visibility and possibly will help us gather more supporters. Please feel free to share this widely as well - the more people who see it, the more support we may have!

Thank you so much. Bulgaria, here we come!

Jill 

https://www.indiegogo.com/projects/send-dunava-to-Bulgaria

Quick catch up

I've been off Xeloda for four days, and did indeed make it through all the Folklife happenings with plenty of energy. Sadly, my hands are worse: my left thumb and forefinger in particular are peeling layers of skin, are painful and dry. Even the Neutrogena Norwegian hand cream isn't helping enough. I think I will go back to using henna tonight.

My feet are the usual ouchy from neuropathy and Hand-Foot Syndrome.

That's all. Off the take a nap!

Xeloda kicking my butt

I haven't  posted recently because this second week of Xeloda has been very tough. My feet are red and painful, my hands cracking, even my tongue has Hand-Foot Syndrome. I'm also really fatigued and no matter how much time I spend asleep, I never seem to be awake enough.

However, I'm really looking forward to Folklife this weekend! Even if I can only attend on Sunday to perform and maybe dance a bit, it's my official kickoff to summer. And thanks to Dr G, I should have enough energy to handle it.

----

Hear me sing with my choir Dunava at the NW Folklife Festival on Sunday May 25 at 4:20 PM at the Cornish Playhouse (formerly Intiman Theatre)

We're part of the Slavic Voices music performance, which begins at 3 pm. Arrive early to get a seat!

From Folklife: "Even better, Folklife is committed to making sure everyone can enjoy the Festival. If you can afford the $10 suggested donation great, if not, even a $2 donation helps keep Folklife free."

Xeloda round 16

I had more methotrexate on Sunday and started Xeloda round 16 the same day. So far I want to touch my finger tips all the time, my feet are still sore from neuropathy and hand-foot syndrome, but fatigue hasn't hit too hard yet. I've been running errands, getting together with friends, etc. Today I have my Avastin infusion and then will treat my self to an ice cream cone on this gloriously hot and sunny day. Then rehearsal tonight. Eventually I will do the piles of ironing, but I think I'll wait for a cooler, wetter day to do so.

Forgot to say that the other day I saw my incredibly handsome and friendly dermatologist for the first time a couple of years. He (as always) found a spot he wanted to biopsy. We're both sure it's nothing but you never know. The biopsy site is so high up on my back that I can't reach it myself, so I am showering at night instead of in the morning in order for Rik to change the bandage daily. Or I could wake up at 6 AM to shower before Rik leaves for school, then go back to bed. What a topsy-turvy world!

Healthline’s Best Breast Cancer Blogs of 2014

I received an email today announcing that my blog had been chosen as one of Healthline’s list of the Best Breast Cancer Blogs of 2014. I believe this is the third time in as many years that Healthline has chosen my blog as one of the best on the web. 

It's such an honor to me to receive this recognition. I started writing this blog as a way to keep family and friends updated on my dance with metastatic breast cancer. Over the years it's progressed from a somewhat private forum into a more public space for me to vent and to inform others about daily life with advanced cancer.

Given the multiple thousands if not millions of online cancer sites out there in the blogosphere, sometimes I have trouble believing that so many people follow my blog. I'm glad to write if reading what I have to say can help a woman newly diagnosed with metastatic disease or her caregivers and supporters.

So thank you, Healthline, for recognizing my work and for putting me in such good company.

There and back again

In a small homage to JRR Tolkien, last week I went "there and back again" -- to Philadelphia for a conference on metastatic breast cancer and a short family visit. I had a chance to spend some real quality time with my mother, enjoyed a shorter visit with my sister and brother-in-law, and made a new friend at the conference.

D offered to ship my conference notes back to Seattle so that I wouldn't have to carry them on the plane. I was delighted to take him up on that offer, even though Alaska Airlines comped one of my bags into the baggage area when I arrived at the airport.

The conference, sponsored by Living Beyond Breast Cancer, was the usual mix typical of these events. Some speakers were highly technical and medical in their comments; others were more accessible (I suspect) to the average attendee. I came away with some good info, none of which I remember now, but will blog about when my box of stuff arrives.

I was surprised to see a small but significant number of women with lymphedema, maybe 20 out of 300 or so. When I travel by air I have to bandage my affected arm, but I have never seen another woman wrapped on an airplane. However, in Cancer Land, there are always a few women with bandaged fingers or toes, arms or legs. I was surprised that LBBC didn't offer a session on lymphedema.

I attended a break out session on writing, which I found very interesting, although the speaker took an hour to get to his point and "prompt" us in a five minute writing exercise. We chose from writing about a piece of music that you find especially important; going back in time to talk with your ten year old self and explain what the future holds; or describe that your cancer looks like and what you would say to it. After we wrote, some people volunteered to share their pieces (I of course volunteered first). I wrote about music and song bringing joy into my life, and after I read, they asked me to sing. I gave them a few lines of Begala E Vena, a Bulgarian song in which I get to yip. I think they liked it. I'll post this bit of writing when the box arrives.

More later, as always.

Not for faint of heart: skin mets

If you ever wondered what skin mets look like.... I have three on my scalp. They itch a bit when forming and then scab over. This scab came off the other day. Actually it softened so much in the shower the scab came unhinged and I had to cut it off.

According to Dermatology Education:

About 70% of all cutaneous metastases in women are related to breast cancer. Skin involvement occurs in 24% of breast cancer cases. It is the presenting sign 3.5% of the time. 

Another cancer blogger award

I received this in my email today:

I hope this email finds you all in good health and having had a good holiday!  I am happy to announce that we have released our 2014 Top Cancer Blog Awards and if you are receiving this email, you have been chosen!  Attached is an updated badge for you to post on your blog (if you already have an older version, either Top Cancer Blog or Empowered Blogger, you can replace them both with this single badge).  We are in the process of updating our website with the new list, as well as publishing a story about the winners, so I will let everyone know when the story is posted.  Congratulations to you all!

I'm pretty sure the holiday he means is Easter, even if I celebrate Passover. Still, it's lovely to be recognized again as a good blogger.