February 29, 2012

The pink handgun and Seattle's Komen

I might be late in coming upon this controversy, but I couldn't resist sharing it, since it specifically mentions the Seattle affiliate of the Susan B Komen Foundation.

Susan G. Komen Foundation Says It Is Not Connected To Pink 'Hope' Handgun [UPDATE] 
WASHINGTON -- The Susan G. Komen Foundation has responded to reports Friday that it is affiliated with a handgun manufacturer selling a pink gun designed to promote breast cancer awareness, saying that it does not have a partnership with the manufacturer and has not received donations from it. 
Business Insider first reported Thursday that Discount Gun Sales was selling a 'Hope Edition' handgun and donating a portion of the proceeds to Komen, the largest breast cancer charity in the nation. Komen came under fire this week for cutting off funding for Planned Parenthood, before ultimately reversing course on Friday and stating that the family planning organization will remain eligible for grants. 
"Discount Gun Sales is proud to team up with the Susan B. Koman [sic] Foundation to offer the Walther P-22 Hope Edition in recognition of Breast Cancer Awareness Month. A portion of each P-22 Hope Edition will be donated to the Seattle Branch of the Susan G. Komen Foundation," read the description on the gun seller's website.

(Read the full article here.)

Ginger tea

I have become a (relative) expert in managing the moderate nausea I've experienced lately on the Vorinostat. Ginger beer for when I want a cold drink. Saltines or other crispy, salty things to eat -- pretzels, Tam Tams, and my favorite, La Panzanella's rosemary croccantini. (When I see them at Costco, three plastic sleeves per box, I grab as many as I can carry.) And because the lemon-ginger tea I like is too pricey when I want to drink multiple cups every day, now I've learned to make my own ginger tea.

I bought a large knob of fresh ginger, scrubbed it thoroughly and chopped it, peel and all, into very small dice. I brought a pot of water to boil, added the ginger, and let the whole thing simmer for 15 minutes. Then I turned off the heat and let it steep, covered, for an hour or more. I added honey to sweeten to my taste, and now have a very strong, ginger tisane* base. I pour some into a glass, add hot water, and it really settles my tummy. All for the price of fresh ginger and some honey (negligible when compared to the cost of a box of tea).

*What's a tisane? It's the French name for a drink made from an herbal or plant infusion.

Because that first bout of nausea was strong enough to warrant taking the drowsy-makig anti-nausea med, I changed the time I take the vorinistat from morning to bedtime. I don't have any nausea in that half hour before going to bed, but it does seem to hit me when I stand up in the morning.

I wake up hungry, eat breakfast, and rapidly develop some nausea. It's all rather moderate, but it still makes me want to lie down again. The ginger tea seems to help with the nausea.

Today it's raining and the wind is blowing, so I'm not really in the mood to walk the dog. (Sorry, Bobka.) He, of course, is already asleep on his dog bed in the other room. I don't think he wants to go for a walk in the rain either.

February 27, 2012

Feeling better

I was on the sofa for five hours yesterday. Between the nausea from the Vorinostat and the drowsiness from the anti-nausea med ondonsetron, I couldn't move. That eventually passed and at 4 PM I got up to prepare to usher for the touring production of Beauty And The Beast.

Now, I've seen many Broadway shows during my life, and I understand how learning the songs in advance increases anticipation to actually see the show. But this show is terrible! Truly, truly terrible -- maybe the worst thing I have ever seen on stage, and that says something, especially for a touring Broadway production. The story line is contrived, the additional songs from the animated film aren't so good, and even the sets don't quite live up to one's imagination after having seen the cartoon.  The costumes were lovely, and of course the actors gave it their all in their performances (the second one of the day).

But still -- in my opinion, it was terrible. I felt bad for anyone who paid actual money to see this.

On the flip side, I did feel well enough to go to the theatre. And this morning I got the word that I can change the time of day I take the Vorinostat. Starting today I will take the vorinistat at night before going to sleep. Even though this means eating another small meal (maybe PB&J on crackers?), if it gives me nausea, at least when the anti-nausea med kicks in, I can just get into bed and go to sleep.

I think this may be the best way to go. And at any rate, I only have to take the Vorinostat through Saturday.

February 26, 2012

Quick clinical trial update

I took the seventh dose of Vorinostat yesterday, and by late afternoon developed the first side effect of nausea and diarrhea. I took some anti nausea meds and ate dry crackers with ginger ale, which seemed to help, then took more lorazepam to sleep.

This morning's dose gave me nausea almost immediately. Since the drug is taken within 30 minutes of eating, I'm a little worried that vomiting might be next. I just took some ondonsetran (a more powerful anti-neusea med) and am headed for the couch to lie down.

February 23, 2012

Eat cake for breakfast

I always knew this was a good idea...

Israelis find that chocolate cake is good for you

Israeli scientists have concluded something that many chocaholics already knew – eating chocolate cake is the best way to start the day.
Research by Professor Daniela Jakubowicz of the Wolfson Medical Centre in Holon revealed that breakfasting on a meal high in carbohydrates and protein – but crucially with something sweet as well – helped keep people full throughout the day.
Prof Jakubowicz found that in a study of 193 clinically obese adults, those who enjoyed a balanced breakfast that included chocolate cake, as part of a wider calorie controlled diet, lost more weight than those who had a less calorific morning snack.

February 22, 2012

Trial update

On Monday I took the first dose of vorinistat, one of the two drugs that are part of the clinical trial. So far I think I have seen no ill effects, although I did have a nose bleed last night and again this morning. Bleeding from the nose or mouth could be a sign of low platelets, so if it continues to happen I will call the doctor's office to report it.

I also spoke with the radiologist in charge of the scan part of the trial. I had asked him to review the two scans taken at UW and SCCA and compare them to my previous PET scan from last November, taken at Minor and James. He said the scans may or may not show changes in my liver mets, due to having been taken by separate machines and read by different radiologists. And of course my tumor markers have continued to drop to almost in the normal range.

This trial expects to show that cancers which were originally estrogen positive, and then changed over the course of time to no longer be as estrogen positive, can be returned to their original sensitivity. The vorinistat, followed by an aromatase inhibitor, would presumably make this happen. Evidently I am exactly the kind of patient the SCCA docs were looking to enroll in the trial. My cancer was originally highly ER+/PR+ and has changed over these nine-plus years to be less so.

The scan part of the trial  measures the success of the drug combination. A regular FDG PET scan shows areas of cancer by their sensitivity to glucose. Tumors uptake glucose more quickly than other cells. Hence I fast before the scan, to have the least amount of glucose in my system. The FES PET scan measures the uptake of estrogen to tumors. No fasting needed!

This first set of scans acted as a baseline. If the drug combo works, the researchers expect to see some change in the tumors' uptake of estrogen, and perhaps a reduction in the size or number of tumors as well. So I will have another set of scans after taking the vorinistat for 14 days, and a third set of scans after taking the aromatase inhibitor for six weeks.

This is a lot of information to take in. Feel free to re-read my explanation. This is the best I understand the whole process.

The latest

While our iMac is in the shop for repair, friends G and D graciously loaned us a computer at least in part so that I'd be able to post to my blog. Here's what's been happening:

The iMac had a new video card installed in November after a random lightning strike hit our neighborhood, destroying our DSL modem in the process. The mac Store confirms that the video card they installed was faulty and they are replacing it. We squeezed in just barely before the end of the 90 day warranty period.

Friends who were celebrating their 30th wedding anniversary with a Jewish ceremony under the chuppah asked me to sing the seven blessings. Rabbi Borodin had already once asked me to learn this music, so I worked hard, and with coaching from the rabbi and my choir's director, learned everything. The wedding was last weekend and it appears I did a good job (minus a few clinkers)! Many people complimented me, but the best came from the groom. He stood under the chuppah with his eyes closed, and later told me it was to better appreciate my singing. This man is a trained singer and a compliment from someone with his level of musicality is especially meaningful to me. At the dinner afterwards the couple had asked several people to lead songs from their favorite Broadway shows. They asked me to lead "Matchmaker, Matchmaker" from Fiddler On The Roof. I confess that I didn't prepare for this other than to sing the song a couple of times, but I think everyone enjoyed singing along and the accompanist played in a good key for my voice. All in all, my soprano got a nice workout and my ego some lovely compliments. I feel like a singer now!

Rik has been off school for midwinter break and we have taken long walks with the dog every day. We went out with friends for a delicious lunch at Stopsky's Delicatessen on Mercer Island (chicken soup with kreplach, half a pastrami sandwich on rye with VERY spicy meat, half-sour pickles and a housemade cel-ray tonic). We also took our neighbors to dinner at El Camino, a Mexican restaurant in Fremont (house margaritas, some truly terrific mole sauce, fried plantain chips with guacamole and shared pecan tart). Our neighbor team teaches at the same school with Rik and has given Rik a ride many times this year.

Maybe we will get to see a movie, play some Scrabble, and/or read some good books, all favorite 'staycation" activities.

February 18, 2012

No computer

Our iMac is in the shop, so look for fewer posts this week.

I will start the vorinostat on Monday.

February 16, 2012

B's death a hoax

B wrote to my Club-Mets-BC online group yesterday to say she'd been the victim of a terrible hoax. Someone stole her computer and posted about her death to our list. B found out she was "dead" the next time she logged on. 

I am taking down my previous post about this issue.

February 15, 2012

Fake Avastin on the USA market

Authentic Avastin FDA-Approved for Use in the United States
SOUTH SAN FRANCISCO, Calif. -- February 14, 2012 -- Roche and Genentech have been informed that a counterfeit product, labeled as Avastin (bevacizumab), has been distributed in the United States. 
The counterfeit product is not safe or effective and should not be used. Chemical analyses of the counterfeit vials tested to date have confirmed the product does not contain the active ingredients for Avastin.

Click here to read more information and the complete press release, including lot numbers for the counterfeit product.

Please feel free to forward this information out to everyone you know.

Counterfeit product

February 13, 2012

Righteous among the nations

More than a year ago, my friend M began the process of obtaining recognition as Righteous Among the Nations for the family who hid his father during the Holocaust. This designation requires careful investigation by Yad Vashem, the Jewish people's living memorial to the Holocaust.

As we move beyond years and into decades after the Holocaust, fewer survivors and their rescuers remain with us. It grows more difficult to provide the eyewitness testimony and evidence necessary to receive this designation.

Click here to read a link to the JT News story about M's father and his rescuers.

And here is the story, as M told it to me:

In 2010, our family returned to Friesland to meet and see where my father had been hidden in the war. We met the descendants of the farmer, and, for me, our meetings were transformative. We had come to give thanks, yet we were welcomed back like long-lost relatives. We visited the actual farm…long since sold and no longer in the family, but were graciously allowed to see the "hiding place". My father had spent 18 months here, simply becoming one of the children, his presence never divulged by those that knew he was there. At one point, I asked one of the grandchildren why she thought her grandfather had done this? The question, I could see, puzzled her. She even turned to her sister-in-law, and even though I cannot understand Friesian, I could see that clearly they had never thought about it. Finally, she turned to me, and said, "Well…it was just the right thing to do". As we left Friesland, which will never be the same to me, I could not forget the welcome we had received nor the motivation for my Father's rescue. I had learnt much about the Netherlands and their not so stellar performance in the war wrt it's Jewish population. So, even though it might have seemed to be "well…just the right thing to do", it was clearly much more than that. I was determined to do something that would recognize that. 
My father had fled Amsterdam for Friesland in late summer 1943. The underground had brought him to a farm near Leeuwaarden. The leader of the underground subsequently betrayed them (who was later executed by the same underground). As can only happen in stories like these, a couple of farmhands rushed to the farmhouse in the early morning and warned them minutes before the SS arrived. My Dad escaped into a field, as a dense fog settled over the area to envelope him and another Jewish fellow, who had also just escaped and now had somehow found each other there. Alone, hunted and scared, another Friesian farmer found them. He directed them to a barn and for the next 6 weeks arranged food to be brought daily. Soon, too many people knew about the "boys in the barn" and they were told to say they were leaving the area. He took them about 10 km away, then after a week or so, returned them to the farmer we visited, my father's friend to another farmer nearby. The ruse, in my father's case, was spectacularly successful, and he spent the next 18 months on the farm, called the "Heskampen". 
For 8 months after we returned from our family trip, I worked to present a coherent application to Yad Vashem, asking for recognition of these farmers. I quickly learned that this honor is not given lightly. There are distinct disqualifiers, such as payment for the rescue, ulterior motivation ( eg adoption of children, conversion ) and qualifiers (the rescuer needed to take full responsibility for the welfare of the rescued, or the rescued person needed to be Jewish and the rescuers needed to know that…not that obvious in Friesland as many who were hidden were not Jewish). It was obvious to me that my father's rescuers at the Heskampen met all those criteria. I just had to prove it to an independent committee at Yad Vashem. From the very beginning the "Heskampen" family bought into the idea of their grandfather being honored, and soon I had what I considered a good presentation. We went through all the disqualifiers. Money? I would ask my Dad. Yes…he said. My heart sank. The farmer, he explained, had given him 100 guilders at the end of the war to help him restart his life. Clearly not what I intended to find out, but a welcome and surprising answer in any case. My father had also wanted the first farmer, the one who had found them in the field, that "Black Thursday", as October 21, 1943 came to be known, honored. It so happened that that farmer had a "daughter", whom my Dad would see from time to time. As you can guess, that "daughter" turned out to be a young Jewish girl that too was successfully rescued. As I felt that applying for the first farmer solely based on what he had done in organizing those first 6 weeks after the raid might not qualify him for recognition, I sent in an application which applied on behalf of the first farmer based both on what he had done for my father, as well as the rescue of the little girl. This, strangely enough, turned out to be a much bigger challenge, but soon both applications were submitted to Yad Vashem.
Last Thursday, I was able to send this email to all the families. 
Justice can have a memory. 
Sixty-six years ago, Dad 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. 
Today I am so proud to be able to tell you that the State of Israel and Yad Vashem in particular have recognized that. Accordingly, from this time onward, the R and D families can tell anyone who asks, that their parents or grandparents now occupy a special place in the history of the Jewish people. 
Indeed, justice does have a memory!

February 12, 2012

Checking in

Just wanted to check in. All is okay here.

Thursday's support group discussion was primarily taken up with conversation about losing Stephanie. I saw Michael in the hallway after both groups broke up (the patients' and the caregivers' groups meet at the same time). We hugged, cried and talked briefly.

I was a bit (understatement) stressed over finishing a grant last week. Our computer crashed 5 times in 15 minutes while I was trying to type, so I gave up and did the work at synagogue. Using a Windows PC, I might add, which was kind of tough on my brain after so many years on a Mac. I had a meeting later that same night. I did finish the grant on Friday, and it was submitted before the 3 PM deadline.

We had a lovely Shabbat dinner with friends, where my chocolate snowball cake was a big hit. (Imagine a flour less chocolate cake, shaped like a dome, and covered in whipped cream.) I went to synagogue on Saturday morning as usual. In the afternoon and evening I devoured the last 400 pages of Stephen King's new novel, 11/22/63, which I recommend strongly to anyone who likes King's fiction, or who likes science fiction/fantasy, or who grew up in the 50s, or who is keen on the theories behind President Kennedy's assassination. (Yes, that 11/22/63.) This may be one of the best novels I've read, certainly one of King's best -- for me it falls second only to The Stand, which I loved so much I've read it several times over the years.

This morning we went for a very long walk with Bobka, and I am pleased that I could do the whole two miles. Soon I am off to a singing lesson and tonight we plan to attend a sheloshim minyan marking the 30th day since a friend lost a parent.

And I should mark here that last Friday was Bobka the dogka's seventh birthday. Hippo birdie two ewes to him (say it out loud), although I am sure he'd prefer a doggie biscuit. Rik and I are lucky to have such a great animal friend in our lives.

February 08, 2012

Another cancer loss

Yesterday my friend Stephanie died of the metastatic lung cancer she'd lived with for three years.

Stephanie and her partner had celebrated an early new year's eve over lunch with Rik and I just a few weeks ago. Later I learned that S got very sick that same night and stayed so for the next couple of weeks. After hearing that there were no other options to treat her cancer, she started on hospice in their home a few weeks ago and her health began to fail. By the end of last week she was clearly "terminal," and between one day and the next, Stephanie died.

Stephanie's death hit me very hard. I read the email in the morning but still started my typical day. While walking the dog and listening to some music, I remembered how Stephanie and Michael had come to the Dunava concert last December, just to show me support. I recalled the time they came to dinner at our home; I was sure we would all become good friends. I looked back on all the times at group that Stephanie and I took opposite views, simply because we saw the world as glass half full or glass half empty. And I sobbed.

I cried for the loss of our friendship which was just starting to deepen. I wept for her partner, who held her as she died and now has to pick up the pieces of his life. I sobbed over the parallels between Stephanie's life and mine, for our similar diagnoses and for my ability to visualize through her dying, what my death might be like. I read Michael's posts and I can see what my partner might go through.

You can read about Stephanie on her blog, The Taffy Times.

Stephanie, may your memory be for a blessing to all who knew you.

February 07, 2012

Komen exec resigns

Karen Handel, vice president for public affairs at Susan G. Komen for the Cure, resigned on Tuesday following public outcry over the announcement Komen would pull funding from Planned Parenthood. 

Read the rest of this article from The Huffington Post here.

February 04, 2012

Ice cream for breakfast day!

Today is international ice cream for breakfast day. There are only three rules:
1. Eat ice cream
2. for breakfast
3. on the first Saturday in February

Make the batter with seltzer, not whipped egg whites
So we did! I invited a few friends we and ate homemade buttermilk waffles (from the Cook's Illustrated recipe) and topped them with Graeter's ice cream,  toasted pecans, frozen berries from our garden (blues, rasps and chesters), Theo Chocolate cocoa nibs, sliced bananas and real maple syrup (for the Canadian, at least).

A good time was had by all!

Waffles rest in a warm oven for 10 minutes to crispen

The finished product

Rik ready to chow down

The chef is ready to eat too

February 03, 2012

Komen backs down

Here’s the press release from the Komen Foundation:

We want to apologize to the American public for recent decisions that cast doubt upon our commitment to our mission of saving women’s lives.
The events of this week have been deeply unsettling for our supporters, partners and friends and all of us at Susan G. Komen. We have been distressed at the presumption that the changes made to our funding criteria were done for political reasons or to specifically penalize Planned Parenthood. They were not. 
Our original desire was to fulfill our fiduciary duty to our donors by not funding grant applications made by organizations under investigation. We will amend the criteria to make clear that disqualifying investigations must be criminal and conclusive in nature and not political. That is what is right and fair. 
It is our hope and we believe it is time for everyone involved to pause, slow down and reflect on how grants can most effectively and directly be administered without controversies that hurt the cause of women. We urge everyone who has participated in this conversation across the country over the last few days to help us move past this issue. We do not want our mission marred or affected by politics – anyone’s politics.
Starting this afternoon, we will have calls with our network and key supporters to refocus our attention on our mission and get back to doing our work. We ask for the public’s understanding and patience as we gather our Komen affiliates from around the country to determine how to move forward in the best interests of the women and people we serve.
We extend our deepest thanks for the outpouring of support we have received from so many in the past few days and we sincerely hope that these changes will be welcomed by those who have expressed their concern. 
Our only goal for our granting process is to support women and families in the fight against breast cancer. Amending our criteria will ensure that politics has no place in our grant process. We will continue to fund existing grants, including those of Planned Parenthood, and preserve their eligibility to apply for future grants, while maintaining the ability of our affiliates to make funding decisions that meet the needs of their communities.

February 02, 2012

Komen screws up again

Yesterday's news about the Susan G Komen For the Cure foundation's withdrawal of support from Planned Parenthood really angered me. Komen says it's all about raising awareness, providing breast health services to underserved women, advocacy and research.

So tell me, how does removing support for Planned Parenthood help give low-income and needy women access to breast health services from a familiar provider?

Although I find it hard to believe that there are Americans who are unaware of the risk of breast cancer, removing funding to Planned Parenthood could mean that some women who might not be aware won't learn about their risk. How does that further Komen's mission?

To me, it's clear that Komen was led to make a political decision about its grant making. This decision can only hurt women, not help women.

Donors all over the country are saying they will no longer participate in Komen fundraising activities. They will withdraw their financial support.

I say, "You go girls!" Kudos for withdrawing your support from Komen, the charity that stopped funding its own mission.

February 01, 2012

Starting the trial

I just got the word that Premera has approved my participation in the clinical trial at SCCA. I've already scheduled  my first labs, nurse visit, EKG and PET scan. Let's hope the rest of the trial goes this smoothly.