September 30, 2015

Story half told

This is the project I couldn't share before today. Go over to Story Half Told and you'll find the stories of five American women living with metastatic breast cancer--  including me!  Or use Instagram or Twitter and  #storyhalftold. I will share more about making the film and being followed by my own paparazzo (singular?).

September 28, 2015

Seattle Die In photos

Sixty-four people came to our Seattle Die In yesterday - representing the 64 Washingtonians who die of metastatic breast cancer every month. Here are some photos Rik took.

September 24, 2015

You can do this

Over the years I've heard this many times from friends and synagogue members: "I wish I could do something!" Well, this is what you can do on Sunday if you live in or near Seattle. 

Sunday, September 27, 2015
12 pm
Seattle Center Broad Street Green 
(near the Space Needle drop off)

This will be a short and powerful event, about 15 minutes long.

Please DO NOT WEAR PINK. It’s okay to wear anything else, including black.

The event goes on rain or shine – be prepared. Bring a plastic garbage bag or tarp to put under you while we are on the grass.

We cannot reimburse you for parking expenses. There is free street parking on Sundays in Seattle and many pay parking garages near the Seattle Center.

Please arrive a few minutes early. We hope to begin on time at 12 noon.

Feel free to invite others to join us. Remember, pink is NOT a cure.

64 Washingtonians die of metastatic breast cancer every month. We want to raise awareness of metastatic breast cancer and demand additional research funding to help save the lives of women and men living with metastatic breast cancer.

My friends M, B and A have been working on this all summer. I realize this is a last-minute notice. We'll be very excited if you join us on Sunday.

Download and print this map or see the map below.

September 20, 2015

The latest

What with the Jewish new year last week, chemo and a medical surprise, I haven't had time to write lately. Here is a recap of the latest.

Even though Rosh Hashanah came at the end of my weekly chemo cycle, I overdid it with baking and socializing on Sunday. By Monday morning I didn't have enough energy to go to services, even to see Rik receive the honor of being called to the Torah. (Evidently at 9:20 am I was moaning, "I'm getting up," even as Rik was getting ready to walk out the door.) We did manage to enjoy lunch with friends on Monday.

On Tuesday I actually made it to synagogue for the second day of the holiday, just in time to hear the shofar blown. There is also one part of the new year's service that I love. We bow before God, as in the daily prayer services, but on Rosh Hashanah one can choose to actually prostrate, getting down on the floor and kneeling. I have done this along with the cantorial soloist for many years, partly because I want to know that I can, and partly because this is the one moment in the year when I acknowledge that I don't have control over everything in life. By kneeling before God, I remind myself that it's not all about me. I believe God has a plan, even if I don't know it or can't understand it.

Okay, back to last week.

On Wednesday afternoon I had chemo. When I woke up in the morning, I did something rare and unusual. I called the Amazing and Wonderful Nurse Jacque to say that I felt awful, my feet were in terrible shape from the neuropathy, I'd had an indifferent holiday at best, and to please ask Dr G to consider dropping one of the two chemos. Dr G agreed to drop the Taxol and only give me the carboplatin.

I also complained about a possible urinary tract infection and later I gave a sample to be tested for infection. Dr G prescribed something to help with the frequent need to urinate, which actually hasn't helped much. I'm waiting for tomorrow to call Nurse Jacque about the final results of the urinalysis and hopefully get an antibiotic. Even if it's only a slight infection, something has been going on for ten days. And if it's not an infection, what is it?

While at chemo Dr G decided my red blood cell count was borderline and would likely dip further after that dose of carboplatin. He ordered a blood transfusion. Surprise!

Thursday I went to my support group as usual. The nurses at the wound center changed my chest bandage and decided it hadn't healed much in two weeks. My former port-a-cath site is almost completely healed. At last some good news! The doctor in the wound center said keep on with what we're doing and that he'd been in touch with Dr G about possible options. I see Dr G this week and will learn more then.

The blood transfusion took all of Friday, mostly because I couldn't get up early in the morning. A friend visited until I started to drowse from the IV Benadryl. I slept for more than an hour and missed my 1 pm visitor. Thankfully she came back, brought lunch, and we had a good talk. Good surprises in the making!

I'm still having insomnia, even with my naturopathic doctor's recommendation of WellMind. Last night I didn't fall asleep until almost 2 am. My feet still hurt tremendously. I'm now taking medication for high blood pressure likely caused by the chemo. This has been a rough time. I look forward to a week or so break from chemo.

As I said, I see Dr G later this week and hope to have a plan, even if it's another brain MRI. Let's hope the carboplatin lowers my tumor markers and has killed some brain mets!

September 12, 2015

Insomnia again

I haven't been sleeping well recently, but this takes the cake. It's 12:53 AM Saturday morning. I didn't sleep well last night and on Wednesday night I had terrible dreams. My naturopathic doctor has recommended a new (to me) homeopathic remedy which we bought today -- meaning Friday.  Have I slept? No. I couldn't even nap this afternoon. 

I finally got out of bed in hope that at least Rik would sleep well. The dogs, of course, sleep through everything except their hunger. I'm ensconced on the sofa, with the iPad in my lap. I expect that I will eventually fall asleep. It may not be until six in the morning, which is usually what happens when I actually force myself out of bed to deal with sleeplessness. That's also the time those dogs get hungry.

Insomnia may seem like the least of my worries but it's very difficult. I find I can't turn off my mind when I get into bed. My feet hurt fiercely from the neuropathy. My skin may be more sensitive, because I itch on my head where it touches the pillow and randomly across my body, tonight around my throat. The open sore mets on my scalp and my chest itch and are painful, but must remain covered. My left arm is in the big blue lymphedema compression garment (I'm left handed) and it's tight. The ONJ spot in my mouth hurts on the right side of my jaw. I've slept on that side my whole life and it's a hard habit to change. The hydrocodone I took before bed doesn't begin to touch all these little things. Together they keep me from sleeping night after night. And when you have metastatic cancer, too many nights of not sleeping soon add up to not dealing well with anything. Especially cancer.

On top of all of this, I clearly had too much water to drink this evening, because I've been running to the toilet every hour since ten o'clock. I took some Uristat to help with that problem, but no dice. I just need to pee a lot.

I guess it's my turn to host the pity party.

September 07, 2015

Words of Torah on my 13th metsiversary

I don't know why, but I've never thought of adding words of Torah to my metsiversary party. But I'd been joking about the cancer bat mitzvah anniversary for months in advance and adding Torah to the celebration made it both more poignant and more meaningful. I asked two loving friends if they would speak to those at the party. They agreed, and they each gave terrific interpretations of that week's Torah portion.

I can't help but find that re-reading these words feels a little bit like reading eulogies for me. On the other hand, anyone would be proud to be called such an example by their loved ones. I most certainly feel that way, and I'm a little embarrassed to be set on this pedestal. But not too much to share here!

D's words of Torah:

Thursday August 20, 2015

Has anyone here read Jill’s blog? Has anyone here not read it? Well whether you have read it or not, knowing Jill means you know how important her Jewish identity and practice are to her.

For Jewish people, the 13th year of life is a child’s Bar or Bat Mitzvah. Typically, we honor this event by reading from the Torah and celebrating.

Today, we are acknowledging Jill’s 13th year of her life with metastatic cancer. In honor of this, Jill asked me to share a few words of Torah.

Jewish people divide up the Torah (the Five Books of Moses) into portions and publically read one portion each week. Throughout the world, Jews are reading and studying the same part of Torah at the same time.

This week’s portion is called Shoftim, which translates to Judges. The portion reminds us that Moses assigned capable, impartial, truth-seeking people to judge and oversee the children of Israel in their everyday affairs. These judges naturally became the leaders of the people.

Moses established this leadership system based on the advice of his father-in-law Yitro. Looking back in time, Yitro came to visit Moses at camp, shortly after the escape from Egypt. Yitro saw Moses wearing himself out settling individual inquiries and grievances all day long. Recognizing that Moses was needed to guide the newborn nation of Israel as a whole, Yitro advised Moses to set some boundaries and share the burden of keeping order among all those people. Yitro described a system of assigning judges, or leaders, for groups of different sizes, ranging from groups of 10 people to 50’s, hundreds and thousands. Groups of thousands of people. Moses must have really had his hands full!

When Moses agreed to share the burden of leading all these people, he had more strength to do the big work that he needed to do. This included educating the people as a whole on the laws to guide their lives, as well as settling the major matters that arose.

Looking ahead to the time when the tribes of Israel had settled in various parts of the land, there was a period without a king or other central leader. In these times, the judges continued to lead the children of Israel. There is a whole book of the Bible (called Judges) telling the story of several of these judges, and how they led the Jewish people to victory against their enemies. Among them was Deborah, one of the few Biblical women acknowledged for her strong leadership role independent of her husband.

Deborah is described as a prophetess who sat under a palm tree and provided judgment to the children of Israel. She also directed the Jewish general to conquer the enemy, and accompanied (or perhaps led?) him into battle when he refused to do it on his own. She ended this battle with a song of victory.

So, we see that Deborah led the people in more ways than one: As wise, impartial judge, and as a courageous warrior, fiercely defending what was right for the Jewish people.

Learning about these ancient leaders of the Jewish people calls to mind the qualities and actions of our friend Jill, a strong leader in her own right.

We are here to celebrate Jill’s 13 years of victory over an insidious enemy – metastatic breast cancer. Like the ancient leader Deborah, Jill is a fighter. Like Moses and the leaders he assigned, she sets boundaries, enlists others to help achieve important goals, seeks the truth and educates the people around her on important matters.

If you have known Jill awhile, I am guessing you can think of examples of each of these things, and more. I will share a few of my own examples.

Through all the years I have known her, Jill has stepped up to just about every leadership opportunity she could find – from leading the Radost Folk Ensemble, to the AIDS walk, the Hadassah office, her synagogue’s board, and her current informal role leading many, many people in learning about, living with and fighting against cancer.

Jill has the wisdom to maintain her boundaries, share the burden and sustain her own ability to do the big work. She advocates for her quality of life during treatment, rests when she needs to and asks for help when she needs it.

Jill is great at inspiring and enlisting others – she builds strong groups of volunteers to significantly expand the ability to get the job done.

Jill has the willingness to learn – best ways to fundraise, how to work successfully with people with a different Meyers-Briggs type, and newest ways to fight the myriad types of breast cancer.

Jill has the communication skills and will to teach, as evidenced by the wide readership and national recognition of her blog.

Jill has the drive to reach out to the broader world and lead people to make things better. Currently she is educating and leading her wide circle of friends and acquaintances in the fight to bring resources and attention to metastatic breast cancer research.

And Jill is a warrior. She would not be alive right now if she was not.

While preparing this d’var, I shared my ideas with my teenage son, and he said –

“Jill is a warrior. When God gave Jill lemons, she didn’t make lemonade. She threw them back and demanded chocolate.”

C's words of Torah:

Deuteronomy chapter 20: 2-4, Shoftim
And it will be, when you approach the battle, that the kohen shall come near, and speak to the people.
And he shall say to them, "Hear O Israel, today you are approaching the battle against your enemies. Lets your hearts not be faint; you shall not be afraid, and you shall not be alarmed, and you shall not be terrified because of them.
For the Lord, your God, is the one who goes with you, to fight for you against your enemies, to save you."
Many of you know that Jill is a Cohen, one of the priestly tribe.
When she was first diagnosed with metastatic breast cancer, she was clear with her friends and her doctors that as long as the cancer did not rear its ugly head, she would leave it in peace - which is what this portion of Shoftim states - always think of peace first before going to battle.
But, if the cancer acts up - Jill was prepared and did fight strongly.
Not only that but she shared her battle and helped others to not be afraid, to not be terrified of it. Fight the righteous battles - to save a life, to help others. Jill has been working these past 13 years on this.
When one becomes a bat mitzvah, you enter into adulthood in the Jewish community. Jill had entered into leadership in this particular community.
May it be until 120.

September 02, 2015

Happy 13th metsiversary to me!

We were so ridiculously busy on my 13th mets anniversary that I didn't get to blog about it all yet.

I decided to hold a big party, and invited 87 people to attend. I didn't even realize I was that friendly with so many people! About 35 folks showed up, which is a great amount for our backyard to hold.

I strung some lights we normally only use in the sukkah, and put them along the deck railing the way my niece Dana did at my 5th metsiversary. Rik moved the heavy table and chairs off the deck and onto the grass. S and her daughter L pulled out all our folding chairs and gave them a wash and some, a scrub (which they desperately needed). They also pulled all the tomato plants off the plastic table and gave that a wash too. Such excellent helpers!

Rik arranged everything into an arc, put chairs around the tables. Someone moved the Radost bench out of its housing in our garage and put more chairs facing it. I found tablecloths and put out tea lights in holders. Sadly, it was cool and windy that evening and the candles blew out right away. Next time I'll listen to S and ask to borrow the battery-powered ones from Radost.

D brought her longer folding table and many friends squeezed the incredible amount of chocolate desserts which people brought for potluck. Thanks especially to G and D for bringing an enormous
cheese platter which all enjoyed. Yes J, I still have your delicious cheese which those foodies would have devoured in seconds.

There was also ice cream (even some Graeter's, my hometown favorite from Cincinnati, now in QFC stores here); wine; lemonade (in case it got hot - feh); fruit; you name it. Mostly chocolate thought. My friends know me well. And I sent food home with as many people as would take (don't worry R: I saved your cake for me!)

The dogs were wild. At least Bob had the sense to lie down in his crate after he barked at everyone. Boychik tried to eat all the chocolate and was a huge annoyance, but it was better to pat him away from the table than listen to him whine from somewhere in the house. I think.

A true highlight came when D and C said a few words of Torah. I had never thought to bring this part of Judaism to my celebrations before, but given that this was my cancer "bat mitzvah," it seemed appropriate. I had asked them to speak that night, and I've asked them if I may share their words on my blog. Update soon.

I said my thanks to all, to Dr G, and to the universe for giving me so many loving friends and family  and years to spend with them. I go t a little ferklemt (that means teary-eyed) and then I blew my annual Bronx cheer to cancer. Also known as a "raspberry," I had to teach some folks who weren't native New Yorkers. You can imagine the sound we made.

To top things off, we made a toast and G and W, who recently were in a production of Fiddler on the Roof, led us all in the famous song from that show "To Life! To Life! L'chaim!"

I try hard to only blow a Bronx cheer on August 20th. The rest of the year I say to my cancer, you can live with me but you have to behave. It hasn't been very "have" lately (more on that soon), but we're giving it the big meds to quiet things down. So far, so good.

Back to the party: D brought her tambura and K his violin and gave an impromptu concert. When D started to play Evo bank Cigane moj, I thought to myself "I know that song!" Of course I did - D let me sing it in a concert a few years ago, the Passover when I dislocated my left elbow. I just had to sing with them. Thankfully D had brought the words.

So there was music, dancing, and eating, hugging and kissing and laughter. In short, it was a fantastic way to celebrate 13 years of living with mets.

L'chaim to all of us -- until 120 years עד מאה ועשרים שנה‎; in Yiddish "Biz Hundret un Tsvantsig"

August 31, 2015

Busy busy busy

I haven't blogged in more than a week because life has been so BUSY!

Soon I'll tell all about the photo shoot and short documentary that took over our lives for a couple of days on my 13th metsiversary.

Then I'll brag about my fantastic 13th metsiversary party!

But for now, let's just say that besides the above, I've had the usual round of medical appointments, my week off chemo, a visit from Rik's high school photography teacher and good friend, a November-like storm that took out power in many places, including us. Two nine-hour power outages here with an hour or two in between where we could make reset clocks, etc. Thank goodness we bought a gas range and were able to have a hot dinner, even in the dark!

We played Scrabble by candlelight and didn't realize the power had been on for almost 30 minutes, until Rik let the dogs out and said, "Hey, there's a light on over there!"

Last night we ushered at the 5th Avenue Theatre for a touring performance of Matilda, the London musical based on Roald Dahl's book. I thought it was fabulous, especially the talented, mostly very young cast.

More soon, including a cancer update. Tomorrow I start Taxol with Carboplatin. That's a big combo, but given that I sailed through Adriamycin, I hope to do the same with Carbo. Said with a strong Balkan accent: I am strong like bull!

August 24, 2015

My AHA moment

A week or so ago, I did a live interview for Mutual of Omaha. They run public service-type announcements on television featuring regular people talking about their "AHA Moment."

MofO seems to want their interviewees to articulate something amazing, challenging, or out of the ordinary that somehow affected our lives in a big way. The employees travel around the USA seeking speakers and also interviewing passers-by. There is one person to interview both random folks and those who are prepared; one person to run the camera; one person as a greeter; and the driver of the van.

I wrote earlier that Gilda's Club Seattle had invited their members to speak, and I said yes. It's a good thing too, because the other person who agreed woke up feeling unwell and Anna Gottlieb, the founder and executive director of GCS, rushed over to the Seattle Center to tell her AHA Moment about deciding to start a Gilda's Club here.

You can view my story here and Anna's here. Remember to turn up the volume!

If you like my little video (I got on my personal hobbyhorse about the government's lack of funding for advanced cancers), please feel free to share it with others.

To paraphrase from Anna, you too can pursue a dream against all odds, and make your dream come true.