The next plan

I spent almost an hour with Dr G, coming up with a next step plan.

1. He liked Dr Gadi's recommendation of combining Afinitor (everolimus) with double aromatase inhibitors. Afinitor is a targeted therapy and is classified as an mTOR inhibitor.

mTOR inibition blocks the translation of genes that regulate cancer cell proliferation. It also results in reduced levels of certain cell growth factors involved in the development of new blood vessels, such as vascular endothelial growth factor (VEGF).

mTOR inhibitors are thought to turn estrogen receptors back "on," so that the cancer would respond to estrogen blockers again. So I will also start high dose Faslodex and Aromasin, a double AI therapy. I've had both of these before. Faslodex is given by injection (two shots in the tuchis, ouch!). The other drugs are all taken orally.

2. I will try this for one month and then have another set of PET scans, full body and brain, to determine how well this combo works.

3. My remaining scalp metastasis will be biopsied and checked for estrogen reception, progesterone reception and HER 2 neu factor. It's apparent that my cancer has changed from highly ER/PR+ to being much less so, but as Dr G pointed out, my cancer did respond very well for years to the estrogen blockers. It's worth rechecking the HER2 neu factor because if that has changed as well (I was originally HER 2 neu-), I could take Herceptin and Tykerb. Dr G may give me these drugs anyway.

4. While I try this plan, we will hold off on any radiation therapy. Since I have no symptoms now, it's a good time to try drugs first. We can revisit whole brain radiation or gamma knife later, if need be.

The downsides?

Afinitor was very recently approved by the FDA and is extremely expensive ($10,500 for a 30 day supply, according to my pharmacist). Dr G's office is checking with my insurance provider to see if they will cover any of this expense. (I do have about two weeks of sample pills to start off.)

Among other side effects, Afinitor also causes mucositis (mouth sores) in many patients. I had terrible mouth sores while on Doxil and had to discontinue that chemo. With Afinitor, if I develop mouth sores, Dr G can decrease the dosage.

It's a good plan. What I like best is having a plan, and knowing that there are still options, such as high dose estrogen and other chemotherapies.

Listen well, my cancer: if you want to stick around, you'll get quiet on this regimen and we will all live longer together.

Happy birthday Israel

Today is the State of Israel's 64th independence day.

I've been to Israel so many times. the first was in 1977, on a gap year program between big school and college. Affiliated with my your movement, Young Judaea, I attended theInstitute for Youth Leaders from Abroad, based in Jerusalem. After five months there, YJ gave me experiences on the YJ-founded Kibbutz Ketura, Moshav Amqa, a Yemenite town in the Galilee, and a month on an archaeological dig. I picked onions, milked cows, and dug trenches - and had a blast!

My next visits to Israel were as a leader of college youth trips. I worked in Hillel Foundations at the Ohio State University and University of Maryland in College Park. Both Hillels had me accompany trips to Israel in the 1980s.

I moved to Seattle in 1991 and the next year I accompanied a staff group to Israel from the Stroum Jewish Community Center. We were part of a larger mission form the local Jewish Federation.

Hadassah also sent me to Israel for the national convention in 2000 (or thereabouts). I've been fortunate that all of my jobs in the Jewish community offered me the perk of staffing a trip to Israel.

Rik and I took our trip to Israel together in 2003. My gap year program hosted their first ever reunion, where I reconnected with several of British friends who'd moved to Israel. My college roommate was also an alumna of this program, and we visited her family on Kibbutz Lotan as well.

I've been privileged to watch Israel grow and change over three decades. It's a country filled with thousands of years of history and the struggle with modernity. But it's a great place!

New blog

Check out The METAvivor Blog, from the organization that exclusively funds and supports research into metastatic breast cancer. The blog is at an early stage, but hopefully women with mets and others will be reading and posting.

More on the Righteous Among The Nations

I recently posted about my friend M's father's rescue by Dutch farmers during the Holocaust. Yesterday, at a ceremony in Ottawa with Canadian Prime Minister Stephen Harper, M was able to tell the story again and to honor the family who helped save his father. You can read about the Canadian ceremony and Mr. Harper's speech here.

Last SCCA scan

I am fed up to here with SCCA and University of Washington Medical Center. The radiology department changed the time of yesterday's scan and never let me know. I had to wait almost 90 minutes from time of check in to when they finally called me! The clinical trial comped my parking for that one visit. (I'd already paid $40 in parking charges for the past few visits.)

Although the sun was shining, I was in the basement of the UW hospital for almost five hours.

On another front: Not only does this clinical trial appear to not work, in addition to about 20 hours of my (volunteer) time, it's cost me hundreds of dollars in fees that my insurance company wouldn't cover because SCCA charges too much. SCCA never offered to reimburse the difference in cost.

Can you tell how frustrated and annoyed I am? Even pulling weeds for an hour after I got home didn't help. Rik was great -- he ordered a pizza, went out to buy Graeter's ice cream, called to find out what I wanted when the store didn't have mocha chocolate chip (I went for coconut chocolate chip), and sat through the first episode of Game of Thrones with me.

Bad news

Yesterday I saw Dr G and got the results of Tuesday's brain MRI and labs. The MRI suggested progression in the central nervous system, meaning I have new, and growing, brain mets. My labs were significantly higher than eight weeks ago, with tumor marker CA 27.29 at 214 and CEA at 40. (Both had been at or near normal.) Clearly this clinical trial is inadequate to treat my cancer.

Dr G and I discussed several chemotherapy drugs that cross the blood-brain barrier or which have a track record for treatment of brain metastases. We also discussed further radiation therapy. Gamma knife may be an option again. Whole brain radiation (WBR) is not an option, as it might likely cause dementia. (My radiation oncologist agrees.)

Although I took the final FDG PET scan of the trial on Monday, no results were available in my electronic record at SCCA. Having any more information might have helped in yesterday's difficult conversation with Dr G. It looks like I will have to wait until after the FES PET scan next week to get information from Dr Gadi. Then I'll see Dr G again to make a plan.

This news was like receiving punch in the stomach. Last year, my complaints of "feeling stupid" led to Dr G ordering a brain MRI. This time I have no symptoms. Indeed, I feel great on the trial regimen. But it's so not working.

I hate the waiting game, when I don't have all the information, just enough to scare the daylights out of me. I was a little taken aback when Dr G asked me directly what Iw anted to do. I think this was "doctor-speak" for was I ready to stop all treatment.

I'm not ready to stop treatment yet, but neither am I interested in treatment which will impair my quality of life drastically. (Hence no WBR, or chemo which would increase my neuropathy.)

Dr G made an analogy to the Battle of the Bulge, which was the last major Nazi offensive against the Allies in World War Two. I could now be facing my last effort to pound my cancer down into submission. 

I hate these battle images, but I did have a talk with my cancer last night. I told my cancer that if it gained so much ground, it would lose the ultimate battle. If it kills me, then it dies too. 

Years ago, not long after my mets diagnosis, I told my cancer that as long as it behaved, it could have a place in my body. The moment it acted up, I would hit it with everything at my disposal. Well, my cancer has been more or less quiet for almost a decade. I am prepared to hit it hard now, but still give it living space, if it will make the deal.

The Righteous Among The Gentiles

Yesterday Jews around  the world observed Yom HaShoah ve-haGevurah, the day of remembrance of the Holocaust and Heroism. Below is the brief but true story of my friend's father's rescue by Dutch farmers during the Holocaust.

Justice can have a memory.

Sixty-six years ago, M's father accepted 100 guilders and started his journey back to Amsterdam. As he left the Heskampen, he might have walked past a young girl who too would soon begin her own journey back home. Both had survived one of the most heinous acts in our long history of adversity and triumph. Neither could have done it alone. Both were helped by many people. A few in particular stand out, who, even though they may not have recognized it at the time, were Righteous Among the Nations.

My friend M is proud to state that the State of Israel and Yad Vashem in particular have recognized that status. Accordingly, from this time onward, the Rozier and Dreijer families can tell anyone who asks, that their parents or grandparents now occupy a special place in the history of the Jewish people. You can read the full story as published in the JT News.


M attended a special ceremony in the Netherlands last year and will travel to Ottawa, Canada for another ceremony.

 Indeed, justice does have a memory!




(And for those who are unfamiliar with how this holy day is commemorated in Israel, watch this video.) The entire country comes to a standstill when people hear the Holocaust and Heroes Day siren.)

BRONJ

I now have BRONJ -- bisphosphonate related osteonecrosis of the jaw.

"After they are taken orally or intravenously, bisphosphonates bind tightly to the surface of the bone directly beneath the bone cells known as “osteoclasts,” which actively dissolve bone. The drugs then become incorporated into the osteoclasts, stopping them from dissolving bone. As a result, bone production continues, bone loss decreases, bone density is improved and the risk of fracture is reduced."    (http://www.aaoms.org/bronj.php)

It started quite a few months ago as what I thought of as a mouth sore, which I reported to Dr G. But it never hurt too much, and so I stopped mentioning it. At my prior dental exam in October 2011, no one remarked upon it. Or at least no one wrote a note remarking on it.

At today's dental visit, my dentist was off so his (younger) partner examined me. She noted right away that something was amiss. Exposed bone appeared in the roof of my mouth. She sent me immediately to an oral/maxillofacial surgeon in the next building. That doc, who I've seen before, wasn't in, but his (younger) partner was, and she diagnosed BRONJ. Kudos to these younger doctors, who caught something neither of my older, more experienced practitioners did.

I told her my medical history, concentrating on how I'd taken bisphosphonates for 9+ years, and how her partner had supervised teeth extractions about 5 years ago. 

She explained that osteonecrosis happens when dead bone remains and is not dissolved, and metastatic cancer patients have known for years that bisphosphonates can cause this to happen.

They took more X-rays and photos of the roof of my mouth, and then the new oral surgeon removed some of the necrotic (dead) bone from the roof of my mouth. I received numbing medicine and nitrous oxide, so I wasn't in pain or uncomfortable.

The good news is that the tissue surrounding the dead bone looks healthy. We hope it will grow over the necrotic bone. I'm to go back for a recheck in one week and then again in one month. 

She will send notes to Dr G, who I see tomorrow, and he can decide whether or not to decrease the frequency of my current bisphosphonate, Xgeva.

I went home with a special oral rinse and instructions to dilute with warm water and swish three times a day. 

Just what I needed - yet another medical specialist to deal with yet another issue related to cancer.

Scans, scans, scans

This week I am in the third and final round of scans for the clinical trial at SCCA.

Yesterday I had to FDG PET scan, the one done fasting. Rik is off school this week, and he took me to SCCA at just past the crack of dawn. I hadn't slept well, so relaxing in the chair while waiting for the radioactive dye to uptake was no problem. I am sure I slept because I woke myself with snores on several occasions. Same with the scan itself.

Afterwards we tried a new place for blunch. (Blunch is what Rik's mother calls the meal between breakfast and lunch. Brunch is more of a late breakfast.) We went to Brave Horse Tavern, where our server was a former student of Rik's. Now, of course, instead of being a short 8th grader, he was a tall young man sporting a mustache. I dined on hearth roasted asparagus with melty teleme cheese, grated egg, and green garlic bread crumbs and shared some good fries with Rik, who had a burger.

By the time we got hime I was ready to crash, and we both napped for more than an hour before attending a volunteer training for theatre ushers.

Today I have a brain MRI as part of the follow up to the brain metastases discovered last spring. This is at Dr G's office, where they will also draw blood to test my tumor markers.

On Thursday I see Dr G, who will give me the results of the brain MRI, the labs, and hopefully the FDG PET scan (assuming SCCA gets him the report in time. I asked for them to fax it but you never know...).

In the middle of all this I'm also going to the dentist for a regular check up. It's a week of doctors, even more so than usual.

The final FES PET scan is next Monday, and I see Dr Gadi next Wednesday for the final, final report on if I am eligible to continue with the trial protocol.

Playing the cancer card

There are times that I just want to say to people, "Stop that (annoying behavior)! Don't you know I have CANCER?" This is known as playing the cancer card.

Annoying behaviors might be any of the following:

"How are you?" (said with great emphasis on are and with Bambi eyes). How do you think I am? I have CANCER!

"That haircut is so cute on you!" My hair is this radically short and has barely grown in months because I have CANCER.

You can imagine other annoying things people with cancer face on a daily basis from even the most well-intentioned family and friends.

Or we living with cancer might play the cancer card to get on the disabled line at the airport security check in ("I can't stand on a longer line because my CANCER disabled me"). There's more, I'll leave it to your imagination.

Well, now we can really play the cancer card, because the people at The Stupid Cancer Store have actually invented one. I bought a pack of ten for $14.99 plus shipping and was thrilled when they recently arrived. I immediately put one in my wallet and added the fob to my keychain. Yesterday, participants at my support group received the other nine cards. Everyone was delighted!

Feel free to support the underlying organization, The I'm Too Young For This! Cancer Foundation - i[2]y.

Young adults, a largely unknown group in the war on cancer, account for 72,000 new diagnoses each year. That's one every eight minutes. It's also seven times more all than pediatric cancers. This is not OK!

Stupid Cancer (aka The I'm Too Young For This! Cancer Foundation, i[2]y) is a non-profit organization that empowers young adults affected by cancer through innovative and award-winning programs and services. We are the nation's largest support community for this underserved population and serve as a bullhorn for the young adult cancer movement.

Our charter is to ensure that no one goes unaware of the age-appropriate resources they are entitled to so they can get busy living.

For more information, visit http://stupidcancer.org.

Feeling pretty good

I'm ending week four of six on Femara as part of this clinical trial and have felt pretty good throughout. I have enough energy to get through a regular day consisting of walking the dog; at least one trip outside the house, sometimes two; preparing dinner;  heading out again some nights for an evening meeting or choir rehearsal.

Over Seattle's recent couple of sunny days, I've also been able to pull weeds in the garden for an hour or so at a time. This has an effect of increasing my lymphedema, but I've been able to keep it under some control with tight bandaging at night.

The neuropathy in my feet continues to bother me although it too is somewhat improved. My toes and the ball of my left foot are still numb and painful. Walking and standing are uncomfortable but as they're also necessary parts of life, I walk and stand as needed and sit when I can.

My hair has grown enough that I actually need a second haircut. My hair was trimmed nine weeks ago for the first time as it grew in post-chemo. It didn't grow back curly, but wavy enough (my usual) to need a whacking back. No bangs yet -- my hair in front is still very short. But this is much better than being bald!

All in all, I am enjoying a very reasonable quality of life on this clinical trial. In two weeks I will have the third round of scans, tumor markers taken, a brain scan (required follow up after last year's brain metastases treatment with gamma knife radiotherapy), and visits with both Dr G and Dr Gadi. Let's hope that all results indicate that the trial is a success and I should continue on this protocol.

Throwing the frogs (part of the ten plagues at our seder)

Passover continues

We had two great seders this weekend! The one we hosted was filled with laughter, singing and lively conversation. The one we attended was remarkably similar, only with more people.

I try to do something new and different for each seder. This year we featured the dress-up seder. Everyone either wore a costume or put on a headdress for this group photo. As you can see, Moses, Aaron, Pharoah's daughter (and his son-in-law), Miriam, midwives Shifra and Puah, some other random Egyptians and Israelites all attended -- plus a camep appearance by the Fonz -- standing in as the wicked son. Two of the three dogs present actually made it into the photo, with Cody in a basket as baby Moses. K brought an oud and accompanied much of the singing, while the rest of us played  tambourines and other rhythm instruments.

On other fronts, the weather has been beautiful and so warm Seattle broke the record on Sunday. I was able to work in the garden yesterday and today. Now the entire strawberry bed is weed-free, at some cost to my lower back. A friend planted a new grape vine for us last week, which we water religiously every day. I also planted some pansies to encourage spring to continue flourishing.

It's supposed to rain again. I'll just have to bake some Passover cookies to cheer us up!

The Two-Minute Haggadah

A few years ago I discovered The Two-Minute Haggadah. I'm sure someone sent it on to me, but I wanted to give the source. It's written by Michael Rubiner of Slate.com. You can find versions all over the Internet, but credit where credit is due!

The Two-Minute Haggadah
A Passover service for the impatient.

Opening prayers:

Thanks, G-d, for creating wine. (Drink wine.)

Thanks for creating produce. (Eat parsley.)

Overview: Once we were slaves in Egypt. Now we're free. That's why we're doing this.

Four questions:
What's up with the matzoh?
What's the deal with horseradish?
What's with the dipping of the herbs?
What's this whole slouching at the table business?

Answers:

1. When we left Egypt, we were in a hurry. There was no time for making decent bread.
2. Life was bitter, like horseradish.
3. It's called symbolism.
4. Free people get to slouch.

A funny story: Once, these five rabbis talked all night, then it was morning. (Heat soup now.)

The four kinds of children and how to deal with them:
Wise child—explain Passover.
Simple child—explain Passover slowly.
Silent child—explain Passover loudly.
Wicked child—browbeat in front of the relatives.

Speaking of children: We hid some matzoh. Whoever finds it gets five bucks.

The story of Passover: It's a long time ago. We're slaves in Egypt. Pharaoh is a nightmare. We cry out for help. G-d brings plagues upon the Egyptians. We escape, bake some matzoh. G-d parts the Red Sea. We make it through; the Egyptians aren't so lucky. We wander 40 years in the desert, eat manna, get the Torah, wind up in Israel, get a new temple, enjoy several years without being persecuted again. (Let brisket cool now.)

The 10 Plagues: Blood, Frogs, Lice—you name it.

The singing of "Dayenu":
If God had gotten us out of Egypt and not punished our enemies, it would've been enough. If he'd punished our enemies and not parted the Red Sea, it would've been enough.

If he'd parted the Red Sea—(Remove gefilte fish from refrigerator now.)

Eat matzoh. Drink more wine. Slouch.

Thanks again, G-d, for everything.

SERVE MEAL.

Jill here: The person who sent this to me must have added the rest, because of course the seder doesn't end after we're done eating. Oh, no it doesn't!

Say Grace. Drink more wine. Sing some more songs. Try to stay awake. Who knows one? Who knows two through thirteen? Dad bought a goat for two zuzim. Everyone beats up every one until God steps in.

Go to sleep.

Do it again a second night.

More Passover prep

I continue to find some energy each day to prepare for Passover but I have nowhere near the kind of energy it actually takes to do everything. So I am limiting m cleaning to the fridge, oven and pantry and we'll use our regular dishes, pots etc. this year.

(For those who don't know, the scourge of breadcrumbs in any form is the hallmark of Passover preparation. Those who follow the zero tolerance policy against bread, pasta, etc. use special pots and pans and dishes that have never held any of those food items. It's complicated -- for more, look here.)

We are hosting seder for ten friends. Because I plan to use our regular kitchen supplies, everyone can bring part of the meal. Here's our menu:

During the seder, I like to serve crudités (cut up raw vegetables) and guacamole, ajvar - roasted red pepper puree - or even salad dressing). It staves off the hunger pangs because it's a long time until we eat dinner!

 The traditional foods we eat during the seder include matzah (unleavened bread), horseradish, a roasted egg, charoset (Ashkenazi apple-nut-wine and Sephardic made with dried fruit and spices), a roasted lamb shank (or a beet, for the vegetarians), bitter lettuce (like the beet greens), and spring greens like parsley. And we drink four cups of wine or grape juice during the evening.

The meal:

Chicken soup with knaydlach (matzah balls)

Chopped liver (my dad's recipe)

Gefilte fish with more horseradish

Hard boiled eggs

Chicken Marbella (a good choice since it makes a sauce and therefore can't dry out while staying warm)

Roasted tomatoes with matzah meal topping (this delicious recipe comes from my sister)

Roasted asparagus

Chocolate carrot cake

Apple cake (another family recipe)

Coffee and tea

You can see there's a lot of cooking, so it's helpful when friends bring stuff!

On top of all the cleaning and cooking, there's also spiritual preparation for the seder ritual. I like to make room for something new every year. This time I have invited friends to dress up as characters from the Exodus (Moses, Miriam with her tambourine, Pharaoh, the midwives Shifra and Puah). We could take a tip from the SingAlong Sound of Music, and dress as a wine glass or piece of matzah (i.e., those who dressed as "brown paper packages tied up with string"). A little lightheartedness goes a long way in this celebration. 

I learned once that Passover is the oldest celebrated human ritual, continuous since ancient times. The Haggadah tells us to recall that in every generation each person is to imagine that it was he or she who left Egypt. To make a personal, individual connection to a communal experience of slavery and redemption challenges us each Passover. That may be why the seder experience has been around for so many thousands of years.