December 23, 2015

Healthline blog nomination

I got this email today:

Hi Jill,
Congratulations – Your blog, Jill's Cancer Journey has been nominated in Healthline 2015 Best Blog Contest! You can see the contest here:
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 21st and will run through January 21st. 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:
I’ll be happy to answer any questions you may have!
Congrats and good luck!
Nicole Lascurain | Assistant Marketing ManagerHealthline
660 Third Street, San Francisco, CA 94107 | @Healthline

Staying hopeful

Last week my friend J died after only a few days with hospice care. I saw her on Thursday at our support group and days later she died. On Sunday Rik and I attended her memorial service. And tonight I went with friends to a shiva minyan at her home. The mourners? Her wife, her college-aged daughter, her sister and other family members.

Joanie, like me, had lived with metastatic breast cancer for more than a few years. We shared many struggles and difficulties, but I think we both approached living with advanced cancer in similar ways.

Sometimes it sucks.

Other times it's just life. Or as our friend D from group puts it, the glass is full.

No, my nickname isn't Pollyanna. My life isn't all smiles and good cheer. It's just that I'd rather find the joy in each day if I can.

Even when I was hospitalized recently and shaking with fever and chills, after the shaking stopped, I tried to relax and practice my yoga breathing. The next day, if I could eat, I wanted some vitamin CH (that's chocolate to the rest of you). 

I don't know how, even in this aftermath of yet another friend's death from advanced cancer, I can still smile. But somehow I manage to find joy in every day.

You might find this article from CURE Magazine of note: Hope in the Face of Death: Living With Metastatic Breast Cancer. The author notes that there are long-term outliers living with mets, naming me and others among them. 

Every click on the article results in a donation to METAvivor. And if we don't give now to fund research into metastatic breast cancer, then when?

December 16, 2015

The Martian (movie) and cancer

My brilliant oncologist, Dr Sheldon Goldberg, writes several blogs on top of treating patients, staying current with cancer research, reading more than 100 RSS feeds daily, studying Jewish texts and raising a family. His brain must be bigger than most people's, and he can store and access so much information.

Recently he saw the film "The Martian," in which one astronaut is accidentally abandoned on Mars after his colleagues believe he died in a storm. It was a great book and a good movie. Dr G blogged about it here and asked me to share his comments on my blog. His take on the film was wholly different from what I expected, and yet it makes perfect sense to me as a cancer patient.

medical philosophy

Friday, November 27, 2015

The Martian: How much is a person worth?

Recently, I saw The Martian, a movie about a man accidentally abandoned on Mars. The movie is about the struggle for survival, the marshaling of forces to allow the survival of that one man, the sacrifice of compatriots and the politics of rescue.
Cancer patients, and the people who care for them, can feel like they are abandoned on Mars. The feelings elicited by this movie are similar to those we, who care for cancer patient patients feel. When do we call the situation hopeless? When do we give up? How much can we put into the effort for one patient? How much can we spend?
In the movie there is no limit. Billions of dollars are spent, scores of people work without rest, people give up years, in the prime of their lives, to attempt to rescue a single man. In our real, medical world the money, the time, the energy are all limited, The resources are shared by thousands of patients. This places every part of the medical system in the position of distributing a limited, precious resource. The doctor must balance the chance of benefiting the patient against the cost to the system, which could mean denying another patient an equal or better chance. Doctors differ in their approach to this problem.

How can we do any less than our best? Our efforts are not like those in the movie. They are not as good as they should be.. The basis for saving the Martian was adoption of a nonstandard strategy, a strategy that would work, in theory, but was not a usual approach. A methodology that involved unanticipated expense and sacrifice.
Currently, the pressure to follow standard procedures is almost overwhelming. Deviation from such standards risks the label of malpractice. Obtaining insurance coverage for a treatment that is not recommended in guidelines, or for a problem that deviates from the FDA approval parameters is a Herculean task - and getting harder. .

Knowledge and Resources are always limited. The Martian was rescued, he beat the odds. It is very expensive and difficult to take on the odds... sometimes it works.

December 08, 2015

A Story Half Told: Life with Metastatic Cancer

If you have metastatic cancer, or you care for someone who does, you're free on Sunday and you live in the greater Seattle area, please join us at Greetings Gilda's Club Seattle.

When: Sunday, December 13 2-3:30PM
Where: Gilda's Club Seattle 1400 Broadway Seattle, WA
Please RSVP by emailing or calling 206-709-1400. 
For more information, see attached flyer. We hope to see you there! 

December 07, 2015


Last night our holiday of Chanukah began. It's about "this" important in terms of Jewish observance. Because it's a winter festival of lights and can fall very close to Christmas, the holiday observed by our government and so many people worldwide, Chanukah has come to take on increased importance in the USA and other Western countries.

That said, how can you not love a holiday whose main observance, after lighting candles (which we do on most Jewish holidays), is cooking and eating foods fried in oil? Me -- I never met a fried potato I didn't like.

Last night I did my usual, annual routine. I made my dad's recipe for latkes (potato pancakes) while listening to Debbie Friedman's album Not by Might, Not by Power, singing as loudly as possible and dancing around the kitchen.

While the latkes were cooking in batches, I made the Joy of Cooking's vegan orange cake, which comes together quickly, bakes in 30 minutes, and doesn't require more eggs or even much oil. I use half the sugar called for and cut the orange juice with half lemon juice, so that it's not as sweet as the original recipe.  I spread chocolate chips over half the top as the cake cooled so Rik and I would both enjoy part of it.

I pulled from the fridge the rest of the cranberry chutney I made for Thanksgiving, some salad, apple sauce and Greek yogurt (didn't have sour cream). After frying so many latkes that the house stank from oil, we ate latkes and salad for dinner until we were stuffed. Rik ate six and I ate four. Shouldn't have had that last one (urp). 

Now that's what I call a holiday!

The first three latkes!

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

Jill's take on Shellie's Latkes

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

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

2. Heat about 1/4 inch of oil in a 10-inch pan over high heat. Scoop latkes using a tablespoon and add them to the hot oil. Don't crowd the pan -- four at a time is plenty. Be careful not to burn yourself! Cook latkes for about 5 minutes per side. Drain on a rack placed in a baking sheet with one inch sides (do not use paper towels), and keep warm in a 250 degree oven. Or eat standing up, while they're fresh from the oil.

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

PS You can freeze fried latkes in a single layer on a baking sheet. Transfer to a freezer bag or other container. When ready to eat latkes again, reheat in a low oven for about 20 minutes or until warm. If you make them in advance this way, your house doesn't smell like fried potatoes or stale oil when the guests arrive. Thanks to my sister for this great tip!

November 29, 2015


I really don't have anything interesting to say about Thanksgiving. You'd think I would, but it seems maudlin to talk about why am I still alive after watching so many friends die of their cancers. So I'm turning over this post to my wonderful husband Rik, who wrote it November 22, 2015 on his Facebook page.

Why I am grateful this Thanksgiving.
Great article from the New York Times today brought it all home. Adding some personal reasons too!
Grateful for Jill being in my life for 21 plus years, and her having the best team of medical care in the world over the last 16 years to manage her Breast Cancer and mets disease, but particularly the last month as she has been hospitalized with two infections, continued chemo, almost finished radiation on four spots and successfully managed Gamma Knife to her brain.
Also grateful for the support of my community of friends, neighbors, and synagogue members who have brought us meals, rides for Jill, company, and of course my colleagues at Roosevelt High for all the support in rides, hugs, good wishes, coffee, coverage of classes for me when needed, and giving me lots of slack, and my students who always are wonderful caring human beings who get that school assignments are not the most important things in life.
See attached photos for Jill in action making the cancer go away!
Jill wears the full gamma knife gear

"What, no second breakfast?!"

And at the conclusion of radiation to four separate spots. That face mask was awful and didn't even look like her.

November 22, 2015

XRT and gamma knife

Tomorrow is the last day of this round of radiation. It will have been ten days, plus one especially for gamma knife to the brain. Of the four types of radiation treatment, I'll have had three: proton, electron and gamma knife, to five different sites (skin met on scalp, skin met on chest, lymph node on neck, lower right rib and brain).

The gamma knife lasted longer than I recall from my first experience, but of course I insisted on having conscious sedation that time, so I don't remember much. This time I accepted six mg of Ativan instead. The numbing lidocaine injections in their three inch needles (so Rik told me, I didn't see them, thankfully) hurt like the devil, but there's no way around that. At least the pain subsided quickly. I have four more tiny holes on my head, two in front and two in back. Those are covered by hair. They're all healing nicely.

Here are some awful photos. Like my snack and the bubble too? The bubble helps the nurse measure the exact shape of the head. I think the "crown" keeps my head still and must get attached to the gamma knife. They didn't show me that part.

Wearing the bubble
With the "crown" and enjoying second breakfast:
 hot mocha and a croissant 
I sent Rik home once it became clear that the procedure would take hours and he could at least be more productive at home than at the hospital. He didn't want to leave but how awful must it be to sit for so many hours with no involvement in what's going on? And at least he could be with the dogs. Or they with him. Not sure how that worked, exactly.

So, a long day. Dr V gave me a prescription of steroids, tapering slowly down from two mg four times a day over several weeks to none at all. The Decadron disturbs my sleep, but I hope a dose of Ambient will help that tonight. I seem to be fine. That first day afterwards was a bit odd. I think I made many verbal goofs but no one seemed to mind. Much. 

Tomorrow, back to my last session of XRT with the kindest, most respectful technicians since the last time. I gave them some vitamin CH as a small thanks for treating me with such delicacy and caring.

Posing with the face mask for regular radiation

November 13, 2015


Today ends the first full week of two for radiation to four spots, otherwise known as XRT (X-ray therapy). I was so fatigued earlier in the week, but I realized this morning that I had tried to squeeze in a blood draw and oncologist appointment on Tuesday and Wednesday, with radiation separated by more than an hour. No wonder I was so pooped.

Yesterday was much more pleasant. I got up early, ate and showered, crashed for a bit and went to XRT. Today the same but I haven't crashed or showered yet. Yesterday's dog walker was a wonderful young woman who instantly fell in love with the pooches, and they with her.

Our synagogue has been providing help through the Mitzvah Corps, a neighborhood group that supports families in need - whether it's a new baby, a death or illness in the family, etc. So far we've had daily dog walkers (and I know not all these people really like walking dogs, but they want to help) and delicious meals twice this week. It's been so wonderful to have this support. It helped us thirteen years ago when I broke my leg and needed assistance with everything, including getting my own lunch.  I fondly remember one friend from Radost who showed up with her mop, bucket and vacuum cleaner to clean our house! I've tried to pay it forward to other families over the years, and now the circle comes around again.

The XRT is first to the skin met on my head, which is doing really well on it, although it will leave a permanent bald spot. I'll have to have a comb over when I grow enough hair. Then to the skin met on my chest, which is bleeding freely when I remove the bandage but which I hope is also healing on this regimen. Then they zap my shoulder and neck lymph node combined. Hard to tell on how well this one is working, because it still hurts. Last is to my right lowest rib, which might have fractured when Bob the dog jumped on it (this happened once before) or is just a new bone met. At any rate, it hurt enough to warrant treatment. The radiation techs are terrific gentle men, who treat with me with dignity and delicacy, worry when I stain my shirt with blood, and actually pick me up and place me down on the gurney to put me in the proper position.

Dr Eulau the wonderful radiation oncologist has actually treated me four times over the years, from my original diagnosis, my mets diagnosis, my ulnae, and now. He is a fabulous, caring physician and I wouldn't have asked anyone else to be on my dream team.

Now it's time for a shower, clothing and more laundry. I actually feel well enough to do all this today!

November 07, 2015

Radiation etc.

It's been a whirlwind week of doctors but now I know what to expect through the next several weeks. If you remember, I told my mets many years ago that if they were quiet, they could live with me, but if they got noisy, I'd bring up the big treatments. So here we go!

1. I met with Dr Sandra Vermeulen, the gamma knife (targeted radiation) specialist, and she says she can zap my brain mets. Maybe only some of them, but some is better than none! She's going after the ones on the top of my head, where most of them live. Then she's going after the three largest in my cerebellum. We actually had a chat after our talk about where to zap, and she's not a chatty lady. Go Dr Sandra!

2. Then I saw Dr Stephen Eulau, my general radiation oncologist. He's treated me several times over the years, from the very beginning in 1999. He's an incredibly sweet, kind man, just the type of person you want on your care team. Now he will treat the two skin mets (the one on my head, the one on my chest), the enlarged lymph node on my neck, the newly diagnosed left shoulder bone met and the also newly diagnosed right lower rib bone met. I had a simulation last week and have to wear a plastic mask each time. It's got holes for my nostrils, eyes and mouth, but still it's icky. I get zapped for ten days, thirty minutes at a time. I didn't like the face mask at all, but a little Ativan helped relax me, as well as some yoga breathing and remembering to keep the top of my head touching the inside of the mask. It's pretty awful but I am tough. Tough enough to deal with a two inch round permanent hair loss. I'll just have to have a comb over like The Donald.

3. I spoke to the wonderful nurse Sally at the Cherry Hill Wound Center and she told me to stop wearing the plastic-ey Tielle bandages and switch to a gauze bandage attached to my skin with tape after I start radiation. I will be sad to lose the Tielles since they work so well and I can wear them in the shower with no extra covering, but Sally told me I can either remove the gauze bandage or cover it with Cling Wrap in the shower. Either way works fine.

4. Dr Flugstad the orthopedist was so happy to see me. It had been two years since our last visit. He's the amazing guy who fixed my left leg and kept me dancing all these years. Dr F confirmed that my left shoulder was not in immediate danger of a fracture (yay!) and that I also have some arthritis in that spot (boo). I guess not a surprise, since I have occasional off-and-on pain from arthritis in both thumbs. He also looked at the recent X-ray of my right rib and thought radiation would be fine for that spot, but noted that I have multiple bone mets in my ribs anyway. Then he watched me walk and confirmed that with the lift in my left shoe (and they were pretty amazing ankle boots) I could walk and stand without issue.

5. Then last and of course best, I saw the Amazing and Wonderful Nurse Jacque. She had to send me over to the lab for a blood draw, since I don't have a PICC line anymore. We shmoozed a little and Dr G came in for an exam.  He still wants me to see someone at SCCA for a second opinion. The only issue I have there is that they think inside the box and Dr G clearly thinks outside the box. But as he says, they know what's coming up next in the research and that can only help. So he will contact Dr Julie Gralow's scheduler. When I spoke with them she couldn't see me until January. Maybe Dr G can do more. And while I was sitting with him, he took a call from a doctor at interventional radiology about putting a "passport" in my right arm. He called me not a patient, but a close friend who is a patient of many years, gave him all the reasons I couldn't have another port-a-cath. From memory. I was so pleased to be in the room while he spoke to this doctor about me and let me overhear the details. This is why Dr G is clearly the doc for me (with apologies for the awful rhyme).

6. I also went to my weekly support group. When I gave my update -- I hadn't seen them in two weeks, since my collapse with shakes and fever while there -- four people offered to help while I was in radiation. Walk the dogs. Drive me to or from. Bring whatever I needed. It was so lovely to have friends new and old step up to help, even while they deal with metastatic cancer. Luckily when I scheduled the radiation, almost all of it will be at times when Rik can drive us both.

7. On Friday I had my latest dose of Alimta (pemetrexate), the new chemo Dr G wants me to take. I ran into a friend and we managed to get the nurses to put our chairs close together. She was alone but I had a friend and the three of us enjoyed a really good visit. This is my second dose of Alimta, and other than feeling like crap when I got home, I spent the day today lazing in bed. Dr G wants me to take Decadron on the day of chemo and for three days afterwards, but it's a very light dose for home. I hope not to have the midnight shopping mania so frequently associated with this steroid. Alimta is given once every three weeks.

That's a lot to report but it should take me through the next two weeks. I will write about how the radiation goes. Onward and upward in every direction!

November 03, 2015

On to November

Pinktober has ended and I personally am glad. Although I figured out the best way as a metster to "celebrate" it (by spending time in the hospital), I am so glad that the end of pink products and pink washing may be over. To learn more about pink washing, go to Think Before You Pink.

A friend told me on Saturday that it may take a week to recover for each day inpatient. Since I was at Swedish for six days, I am going to try to take things easy this month.

Last week I saw the brain radiation oncologist and she says she can treat my multiple brain mets with gamma knife radio surgery. She did this once before when I had only four bran mets. Now I have more than twenty but she is confident.

Today I see the radiation oncologist. Tomorrow I see the orthopedist, just in case something in my shoulder might break. I have a new met(s) there, and on my lowest right rib. I don't want to risk a fracture when I turn over while sleeping or other such event.

Today's rad onc will look at the left shoulder, right rib, enlarged lymph node on my neck and my two skin mets. I hope he can treat them all since I am so tired of complaining about the last three items for months and not really being heard.

When I have more to report I will check in. I might wait until I know about everything.

October 27, 2015

Home sweet home

Yay! Swedish sent me home again this afternoon.

Infectious Disease Dr said I have 2 bacterial infections - klebsialla (coliform, or a kind of E. coli, which everyone carries) and serratia (water based). Who knows how I got them or why. I'm getting oral antibiotic Levaquin now, once every 24 hours, for five days. Don't click on the links unless you enjoy being grossed out or like medical stuff.

My friend G told me the following: "Serratia marcescens belongs the family Enterobacteriaceae, which includes E.coli and Klebsiella pneumoniae. They are both associated with nosocomial infections (hospital acquired). Serratia in particular is associated with catheter-associated bacteremia."

So it was correct to presume that my PICC line was the cause of these infections. And I have been prone to infections for several years, since my early onset breast cancer in 1999 (I developed toxic shock syndrome in the drain placed after my lumpectomy). This shouldn't have surprised anyone. And yet it did. Even though I've been hospitalized several times over the years for infections.

But I am healthy now and ready to pick up life from where it veered last week. Thank you Swedish Medical Center's phenomenal staff!

October 26, 2015

Update Monday

I am recovering bit by bit.

The weekend was full of antibiotics and friends. Today I learned that I most likely have two different infections. One is coliform, the bacteria that can cause E. coli. You hear about kids eating hamburgers filled with fecal bacteria. But we all harbor some kind of E. coli and it takes just the right thing to trigger your own body's stuff. I think I got that right.

Dr infectious disease named the second infection in the early morning and I can't remember it now. It had something to do with water/blood bacteria.

I've had more IV antibiotics today but if Friday's and Saturday's cultures come back growing the same thing as Thursday's, I can move to an oral antibiotic and go home. So I hope to be here until tomorrow. As you know, nothing is certain when you're inpatient at the hospital.

October 24, 2015

At Swedish

I guess this is really how one "celebrates" breast cancer month: by getting admitted to the hospital.

On Thursday I developed fever and chills around 2 pm during my support group. The great social worker took me over to a nurse for my temperature (high). She called Dr G, and got me a wheelchair ride to the ER.  After a few hours, a chest X-ray, and sharing with both Dr G and the ER doc, I learned I had pneumonia. Rik's colleague gave him a ride from school and eventually we went home around 6 pm.

On Friday I awoke to a call from the ER. They think I have a blood infection, come right back. I picked up Rik from school and we arrived around 10 am. More checks, more drugs, more fever/chills. Lost my lunch several times. Dr G decided to admit me but a room wasn't ready until almost 6 pm.

Now I'm on the 12th floor with a fantastic view of downtown and the waterfront. I've had numerous antibiotics, platelets, and a blood transfusion. No one knows exactly what kind of infection I have. Most likely to be in my PICC line, which has also received its own special antibiotic.

I actually slept last night, no doubt due to fatigue, less sleep the night before and Ambien. God bless sleeping pills. I had fever /chills again  in the middle of the night but they haven't returned yet.

After my shower this afternoon I felt the best I have in days. I have energy but am stuck here on my butt until they decide whether or not to pull my PICC line. It all depends on if the infection clears up. Or as Dr G told the infectious disease doc, better to pull it than to risk her life.

So. Waiting and waiting. Bad food corrected by Rik who brought yummy lunch from Bakery Nouveau and friend C who brought dinner from Ma'ono (fried chicken). Boredom corrected by good buddy G who dropped at just the right time, five minutes after I got out of the shower. More friends coming soon. Spoke to my mom twice.

Are you getting the picture?

PS if you can, please give blood you don't have to tell me if you can or cannot. But it's a good thing to do.

October 15, 2015

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.

October 13, 2015

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

About Mandi
My Diagnosis & Treatment
The List

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.



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.

August 19, 2015

Technical vs. conventional wisdom

If you're into the breast cancer rates of recurrence conversation (as I am), check out these two articles for some totally different takes.

The full Medscape article is here.
The Mystery of a Common Breast Cancer Statistic -- Solved?
Nick Mulcahy
August 18, 2015
A commonly cited breast cancer statistic — that 30% of all early-stage breast cancers will progress, despite treatment, to deadly metastatic disease — appears to have no strong contemporary evidence to back it up. 
Nonetheless, the statistic appears widely. For example, it is cited in an academic report (J Intern Med2013;274:113-126), in a breast cancer charity report, in a pharmaceutical marketing piece, and on a major cancer center website
In short, the 30% figure is conventional wisdom — despite the absence of an authoritative epidemiologic source. 
But is that statistic accurate and reflective of current clinical reality? And should clinicians repeat it to patients? Perhaps more importantly, does the statistic really matter? After all, the treatment of women with early-stage disease will not change whatever the statistic is, correct? 
Medscape Medical News went in search of answers to these questions and found angry patients, a clinician author trusted blindly by a lot of people, and special access to a common database that, in fact, appears to solve the mystery of the proportion of early-stage patients who progress to metastatic disease. 
Our story begins with multiple women with metastatic breast cancer who are dismayed or angry about the fuzziness and mystery of the 30% statistic, and have said so online.

I would like to know the true stats of how many breast cancers come back no matter what the hell we do for treatment.

For example, in a 2013 post on the bulletin board, "SusansGarden" from Gig Harbor, Washington, wrote: "I would like to know the true stats of how many breast cancers come back no matter what the hell we do for treatment." 
The topic has been discussed repeatedly by "metsers" for a few years, but a recent blog post got a lot of attention. 
On July 21, metastatic breast cancer patient and blogger Ann Silberman, from Sacramento, California, examined the 30% statistic. For the individual patient, "none of this matters," she wrote. "You will relapse or you won't." But Silberman, who unsuccessfully looked for a credible source for the statistic for 7 months, added that "it's harmful to mis-state things, use scare tactics, and otherwise try to make a bad thing worse." 
The post, with its reference to scare tactics by prominent breast cancer organizations, including Komen for the Cure, prompted a response from the Metastatic Breast Cancer Network (MBCN), a respected patient advocacy group. (continues on pages 2 and 3.)
NOTE: This next article is NOT the  2005 CME review on metastatic disease referred to above and published in the Oncologist by prominent medical oncologist Joyce O'Shaughnessy, MD, from Baylor University in Houston, which is quoted above.

Images from the full scientific abstract from PubMed are here. 
 2013 Jan;137(2):449-55. doi: 10.1007/s10549-012-2366-0. Epub 2012 Dec 6.
Effect of HER2 status on distant recurrence in early stage breast cancer.
Hess KR1Esteva FJ.Abstract
It has long been recognized in breast cancer that the effect of hormone receptor (HR) status on recurrence rates varies over time and with the site of recurrence. However, there is relatively little in the literature on the effect of human epidermal growth factor receptor 2 (HER2) on recurrence patterns. We wanted to assess whether the effect of HER2 status on the risk of distant recurrence changed over time and/or with HR status and whether these relationships varied with site of recurrence. We retrospectively studied 11,011 women diagnosed with stage I, II, or III breast cancer after 1997 who had data on HR status and HER2 status. 20 % were HR negative and HER2 negative (so-called "triple-negatives"), 7 % were HR negative and HER2 positive, 64 % were HR positive and HER2 negative, and 10 % were HR positive and HER2 positive. The estimated overall cumulative incidence of developing distant metastases is 20 % at 4 years, 30 % at 8 years, and 36 % at 12 years. The 12-year cumulative incidence was 23 % for bone, 16 % for liver, 14 % for lung, 13 % for distant lymph node, 10 % for brain, and 8 % for pleura. After adjusting for potential confounding factors, the nature of the effect of HER2 on recurrence rates was found to differ markedly across the sites of recurrence. For brain and pleura recurrences, the effect of HER2 depended on HR status in ways that significantly changed over time. For bone recurrences, the effect of HER2 did not depend on HR status, but did change significantly over time. For liver and distant lymph node recurrences, there was a significant effect of HER2 status that did not change with time or HR status. For lung recurrences, rates did not significantly vary with HER2 status.PMID:
[PubMed - indexed for MEDLINE]