Pinktober means

I have never, not even once in thirteen years, danced with "NED" in my dance with metastatic breast cancer. NED, of course, means no evidence of disease. I started off with bone mets, and once with them, as with a broken bone, there are always leftover reminders. So no, I've never danced with NED.

I've also been overwhelmed by the newest mets-sisters belief that they are dying of mets; that pink is not a cure; and that there is nowhere near enough research on mets. The second and third bits are true: pink isn't a cure and the NCI still funds too little towards any metastatic cancer.

But I have have a hard time grasping the first point. Am I dying from mets? How does that explain 13 years of living with it?

I remind myself that at the very beginning of this dance with advanced cancer I dreamed that my house was too noisy with other people I didn't know. I ran from room to room asking them to be quiet. And when I woke up, I realized that the house was my body and the people were my tumors. I gave my cancer a chance to quiet up and I would give it a home forever, because if I died, my cancer would die.

That's still true after 13 years, and I have to remind myself of it, especially now that I'm involved with younger activists who argue differently. I still want to be involved with them. They are the future of metastatic cancer.

I just am not ready to die.

Think Before You Pink.

The day we died on the Capital.

Awash in Pink.

Metastatic breast cancer awareness day

Yes, out of all of Pinktober and the entire year, they give us ONE DAY. In honor of that one day, I want to quote from my friend Mandi, author of the blog Darn Good Lemonade





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5 Things Not to Say to Someone With Metastatic Breast Cancer
Posted By Mandi on Oct 13, 2015 | 1 Comment


In honor of metastatic breast cancer awareness day (October 13), here are 5 things not to ask someone with metastatic breast cancer:


1. When will you be done with treatment?


The answer is never. We will be in treatment until we die. Even if the magical NED (no evidence of disease) status comes. Once you have stage IV breast cancer you have circulating cancer cells in your bloodstream that have to be kept in check. The average lifespan is 3 years after metastatic diagnosis.





2. I thought breast cancer had a cure?


You will see 99% and 95% cure rate stats floating around. Those stats say that with early stage detection, 95-99% of women will leave past 5 YEARS. Not live forever. read the fine print. I hate this stat. 20% of women with stage IV live past 5 years after diagnosis of stage IV. 5 years past my stage IIB diagnosis is coming up on December 30, 2015. I am not even going to give you stats that involve brain metastasis, we are already pretty upset at my house these days without stirring that pot. Let’s just hope I make it to that 5 year mark, just need 2 more months eh?


3. But you look healthy?


When I won an award that required I be in active treatment for breast cancer, the other woman there with me happened to be early stage and acted fairly upset that I was there with all of my hair (little did she know 5 minutes after shooting the news spot I had to run and get radiation to my spine). It really upset me, I felt like she seemed to think I was faking my illness and it also concerned me that she knew nothing about metastatic breast cancer (spine radiation was one of the worst things I have ever been through by the way). Just because someone doesn’t looks sick on the outside, doesn’t mean they aren’t sick. This goes for many other diseases that are called “invisible illnesses.” I know sometimes people mean well when they point that out, but we don’t exactly want to look sick and it isn’t a gauge on how we are really feeling.





4. But you got the “good cancer?”


HA! All cancer sucks. Yes, some people live longer with some cancers. Some cancers are nearly curable. They all require crappy treatment and side effects. Let’s just cure ALL cancers and I seriously want to hear how cancer in my spine, lungs and brain is the good cancer, mmkay?


5. Men don’t have breasts, they can’t get breast cancer?


Men do get breast cancer. They actually have the inner-workings of a breast that just don’t actually become them because of hormones. That whole XY chromosome thing. I don’t need to teach you biology, but men get breast cancer and they get metastatic breast cancer. Don’t forget them.


For metastatic breast cancer awareness day, I beg you to share a story of someone you love/loved that has been impacted by stage IV breast cancer, share facts, share what it is. Share that we need metastatic breast cancer research. SHARE! <3 Also, if you have metastatic breast cancer – what did I miss? Add in the comments.


Jill's news:

I saw Dr G today and Monday's CT was "not favorable." I have new mets in my liver and lungs.The lung mets have come and gone over the years and are particularly tiny (5 mm each), so I guess I'm not going to worry about them much.

Dr G wants to increase my dose of carboplatin and add Alimta (pemetrexed). Nurse Jacque said these are given once every three weeks, with vitamin B12 for the Alimta. That shot had a very tiny needle. I'll know more once Premera has approved these chemos. Alimta crosses the blood-brain barrier and has low toxicity, so it's very appealing. We also discussed ixabepilone, cytoxan and a new therapy called abemaciclib. 

He'll get me in to see a radiation oncologist to treat my skin mets and enlarged lymph node. Dr G will also try to get me in to see Dr Julie Gralow at UW for a second opinion. She's a widely renowned oncologist who travels around the world and is most likely to know about new research. But since she travels so much, it may be a long time before I get in to see her.






















Healthline






Healthline

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?).

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.

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.

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!

Shana tova!

Thanks to Rhymes With Orange for such a great 'toon!

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.

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
Shoftim

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.

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"