Thursday, March 29, 2018

#BlogExodus: Welcome

Although I’m not sick (pooh, pooh, pooh), today I welcomed yet another doctor to my larger-than-average cohort of medical professionals. I’ve signed on to be a subject in a research study surveilling BRCA2 mutation carriers and others at high risk for pancreatic cancer. The study’s primary outcome measures are:

  • The number of premalignant or malignant pancreatic conditions found by alternating annual endoscopic ultrasound (a somewhat invasive procedure that requires anesthesia) with MRI testing over the course of five years
  • The number of participants with premalignant or malignant pancreatic conditions, as a measure of safety and efficacy

I know I sound like a broken record (do millennials understand this expression?), but BRCA mutation carriers are at increased lifetime risk of developing not only breast and ovarian cancers, but also pancreatic and prostate cancers, as well as melanoma and male breast cancer. Furthermore, the lifetime risk of pancreatic cancer is higher among those with BRCA2 mutations than those with BRCA1 mutations. The risk for BRCA1 mutation carriers who also have a family history of pancreatic cancer approximately equals the risk among those with BRCA2 mutations.

It’s estimated that one in 400 people in the United States carries a BRCA mutation and most of them are unaware of their genetic status. Within the Ashkenazi Jewish community, approximately one in 40 people is a BRCA mutation carrier.

Considering that the schlep to White Plains was relatively painless (thanks to the good company of my sister!), there seemingly are no downsides to my participating in this endeavor. Of course, it will offer me a layer of protection against pancreatic cancer that I otherwise would not have, but it also will advance the body of scientific knowledge around screening for this disease, potentially saving lives along the way.

For more information about BRCA and other hereditary cancer mutations, visit FORCE: Facing Our Risk of Cancer Empowered, a grassroots organization that offers information and support, and promotes evidence-based research, advocacy, and awareness endeavors on behalf of individuals and families affected by hereditary cancer.

Inspired by Ima on (and off) the Bima, this post is one in a series marking the days of the Jewish month of Nisan leading up to Passover, which begins at sundown on Friday, March 30, corresponding to the Hebrew date 15 Nisan 5778. If you want to play along, check out this year's #BlogExodus and #ExodusGram prompts.

Sunday, March 25, 2018

#BlogExodus: Thank

Dear Alex,

I’ve experienced my fair share of “small Jewish world” stories – especially given that I work for Judaism’s Reform Movement – but nothing quite like what happened this week. So, I want to thank for being the catalyst that made the planets align in my world.

It started with your Facebook post:
"I am so grateful for all the Lafayette students I've worked with over the years. One of my favorites just stopped by my office and it was awesome to hear how well she is doing as a young professional in Chicago.
Shout-out to Laf alums who are my FB friends! Please comment with what year you graduated and what you are doing now."
I commented with this:
1985. Senior writer and editor at the Union for Reform Judaism, where I manage blog content and curate Ten Minutes of Torah, a featured blog post sent daily to a subscriber base of between 20,000 and 60,000 individuals.”
And then the conversation continued:
Alex: “Love it.”
Me: “And probably your ‘alumna of longest standing’ FB friend!”
Alex: “I think that honor actually belongs to Liza Roos Lucy!"
Liza: Class of '74 P '12 P '15”
Me: “Liza Roos Lucy win! :) Happy Friday!” 
Liza: “Jane E. Herman to be fair, I didn't know Alex from the time I was a student. I know Alex through my daughter, Elizabeth Lucy class of ’15 and because my cousin, Susan Katz is her friend.
Alex: “I think I am fortunate to know all of you!”
Me: “Liza Roos Lucy I don't know her from my student days either. I met her about five years ago when I spoke on campus as part of the Madame de Lafayette speaker series.”
This might have been the end of the conversation and the story, but for some reason, I went to Liza’s FB page to see a bit more about her and this is where the story gets a little, um, bizarre… because she’s from Honesdale, PA.

See, I have a longtime friend who is the once-a-month rabbi at historic Congregation Beth Israel, the Reform congregation in Honesdale. During the last few months, I’ve told him a few different stories, to which he’s always responded, “All roads lead to Honesdale.”

In fact, it seems they do. A while back, at a bus stop in New York City, a woman asked me about the boots I was wearing. We struck up a conversation while we waited, and I learned she has a home in Honesdale. When Gene Kelly had surgery a few months back, I saw on FB that he would be recovering at his parents’ house…in Honesdale.

And now this.

So, I sent this message and snippet of information from Liza’s FB page to my friend Elliott, who is not on FB:
Don't ask, but I'm in a FB conversation with a few people, and one of them has these "stats":
Studied at Lafayette College
Went to Wyoming Seminary Upper School
Went to Honesdale High School
Went to Wyoming Seminary Prep School
Lives in New Hope, Pennsylvania
From Honesdale, Pennsylvania
All roads… 
He responded immediately: “Liza!”
Me: “You know her???”'
Elliott: “She’s a very good friend and president of the congregation.”
Me: “OMG....I'm going back on FB...this is the best small Jewish world story. OK if I share that we had this convo?”
Elliott: “Sure.”
That’s when I went back to your post and wrote this to Liza: “When I saw that you're from Honesdale, I reported in to my friend, Elliott, with whom I echat nearly daily, and, alas, another great small Jewish world story is born...Honesdale, Elliott, Laf!”

Here's the rest of the conversation that took place on FB Messenger.
Liza: “Whoa! You are Elliott's friend! I am president of Beth Israel in Honesdale where Smitty was rabbi for 44 years and now Elliott.”
Me: “I know!! Small, small world! I work at the URJ, where he used to work...and we've been friends for 15 years!”
Liza: “Did you speak a few years ago at a genetic counselor event?”
Me: “In Honesdale? No. At Laf Coll... yes, as a Madame de Lafayette speaker. I am a BRCA mutation carrier and very active in the hereditary cancer community, committed to raising awareness about these mutations, especially in the Ashkenazi Jewish community.”
Liza went on to tell me about her daughter, Alex, also a Laf Coll alumna and a genetic counselor specializing in breast cancer. She said that when Alex lived here in NYC, she and I spoke at a hereditary cancer event and according to Liza, “she will remember you.”

In the meantime, I was having a simultaneous conversation with Elliott…and anyone who knows me well knows that multi-tasking is not my forte.
Me: “Liza just asked me if I spoke at a genetic counselor event a few years back...the world is getting smaller by the minute!”
Elliott: “I had told her about you. Her daughter is a genetic counselor – specializing in breast cancer.”
A little while later, I connected on FB with Liza's daughter, Alex, who now lives in Philly, but we haven’t yet figured out at what event in NYC (or perhaps in Philly) we met.

Liza and I chatted a bit more before I had to get back to work, but I’m sure we’ll talk again – either on FB or perhaps even in person.

Sharing all this convoluted connectedness is not to demonstrate FB’s tremendous power of relationships, but really to thank you for expanding my Lafayette network, my genetic counselor/hereditary cancer network, and most of all, for giving me perhaps the best small Jewish world story ever!

Wishing you and your family a wonderful Easter,
~ Jane.

Inspired by Ima on (and off) the Bima, this post is one in a series marking the days of the Jewish month of Nisan leading up to Passover, which begins at sundown on Friday, March 30, corresponding to the Hebrew date 15 Nisan 5778. If you want to play along, check out this year's #BlogExodus and #ExodusGram prompts.

Saturday, March 24, 2018

#BlogExodus: Rise

Yes, definitely
  • Gun safety laws
  • Youth leaders
  • Confidence
  • Self-esteem
  • Commitment to do good
  • Self-care
  • Knowledge (“You can’t know too much,” says my dad.)

 No, thanks
  • Gun violence
  • School shootings
  • Cholesterol
  • Blood pressure
  • Stress
  • Conflict
  • Noise

Inspired by Ima on (and off) the Bima, this post is one in a series marking the days of the Jewish month of Nisan leading up to Passover, which begins at sundown on Friday, March 30, corresponding to the Hebrew date 15 Nisan 5778. If you want to play along, check out this year's #BlogExodus and #ExodusGram prompts.

Thursday, March 22, 2018

#BlogExodus: Ask

The long post below, which appeared on Facebook on Monday, was written by Maria, a friend whose husband is in need of a kidney transplant.

After I read it, I wrote this comment: “Sending you love and strength and prayers, and all good things as you and your family move forward together. xoxo.”

She responded with this: “Thank you. If you can, please share my post. You have a big network of friends. Who knows how things will unfold...”

“Of course!” I told her.

What she says is true. We don’t ever know how things will unfold. With that in mind, I’m asking you to please read the post below in the hope that somehow, through contacts, connections, or coincidence (which, according to Albert Einstein, is God’s way of remaining anonymous), things will unfold well for Maria and her family.

I need to admit that this is a terribly difficult post for me to write. I hate publicity and I hoped, all along, that my family and I will be able to avoid going public and exposed about the things we are now facing. Unfortunately, sometimes you don’t have another choice but to do whatever you hate the most. 

My husband of 16 years, Arcady Litmanovich, suffered from kidney related problems since he was a young boy. At the age of 14, one of his kidneys got removed and he remained with one malfunctioning kidney. Back then he was also infected with a hepatitis C virus, which he had successfully treated a few years ago. Despite his continuous struggle with Chronic Kidney Disease, Arcady led a fairly normal life-style until about four years ago, when his condition got into its fourth, pre-final stage. For the last few years, Arcady has been following an extremely strict diet, while his vitality and overall health has rapidly declined. 

Now Arcady is in kidney failure. Since this was an inevitable outcome of his disease, I started to inquire about becoming a donor for him a long time ago. Although, we are not blood type compatible, I’ve considered an option to do a kidney donation swap – when you donate a kidney to someone with a compatible blood type and their designated donor donates to your patient. After starting the process, however, I’ve realized that nowadays, you can donate to your patient directly even when your blood types are incompatible. NYU Hospital is a champion in this and it really amazes me what wonders modern medicine can do.

As scared, worried and upset as I was about the decline of Arcady’s health, I was one hundred percent complete with my decision of becoming a donor to him. In fact, I really wanted to do that. See, we are together for many years and I love him very much. Before we got married, I was aware of his health issues. Even though, it was remote and seemed unreal back then, when we were young and careless, I knew that one day I, as his wife and a potential mother to his children, will need to take an action. And, as a young woman, many years ago, I made a decision. I knew that if I marry this man, there will come a day when I will need to donate him one of my kidneys. And thus, every time I would eat a hamburger or drink one or two glasses too much, I would tell myself, “Stop, you need to take care of yourself, you have a kidney to donate and it needs to be healthy…” So, when the time did come, I was as ready and willing as I could possibly be to donate.

I was fearful, of course, after all, we have two children, one of whom is very young, and another is almost a teenager… Some people said to me that I was a bad mother for considering taking this dangerous step and potentially putting my life in danger. I listened. It scared me a lot. But after talking with people who became donors themselves, as well as after meeting with the NYU transplant center medical team, I’ve realized that the screening process is so severe that, if I would get the permission to become a donor, I’ll be able to make it through the surgery and will continue to be as healthy as I was before… Arcady, too, after starting the process became open to the possibility of donation. He didn’t even want to hear, at first, about me or someone else donating a kidney to him. But the more he learned, the less reluctant to this idea he became…

So, this was the journey we were going through in the last few months. After taking numerous tests, I was told by the medical team that I was healthy enough to be a kidney donor. I was beyond happy about that. I was moved to tears by the possibility to give Arcady new life... We were always there for each other and together made it through many hardships. I wanted to give back for everything that he had given me throughout the years… The question remained, whether we’ll decide to go through the incompatible blood type transplant or do the transplant swap. Unfortunately, a couple of days ago, I’ve got a call from the hospital. The medical team reviewed again my test results and, apparently, in my particular case, a sole kidney will be unlikely to bounce back and function well enough for me to be healthy. If I do the surgery, I’ll myself develop a Chronic Kidney Disease which, may, eventually, bring me to kidney failure…

I’ll not lie, I’m absolutely devastated by this outcome. For a long time, I was a woman with a plan and since I had a plan in place, things didn’t seem as overwhelming. Now – I’m lost. We need to look for a donor ASAP to save Arcady’s life and well-being. But how can you ask someone to donate a kidney to someone else?? How do you put such a request out there: “we are in need of a kidney, could you spare yours, please?” Personally, I really struggle with this. Just take my kidney and don’t make me ask others to do that… And, yet, now I don’t really have another choice, but to put the info out there. Simply, because this is a matter of life and death and I don’t know what else to do. We are working with an amazing Jewish organization, Renewal – they were working with me as a potential donor to Arcady and they will continue helping us now.

So, I have no idea how to put things out there, but I am putting them out there anyway. A wise colleague told me yesterday: it’s better to hear a “no” than to miss a “yes”. It is, indeed, so. No one knows what will happen and how things will unfold…

Before I conclude, it is important for me to mention two things: for a long time, I was wondering, why did Arcady, the most selfless of people, change his mind and became willing to accept a living donor transplant? Then it occurred to me: He was looking at the situation through the prism of his own eyes. If I or anyone of his loved ones or friends would get into his current place, he would not blink twice before becoming a donor and saving a life. I’ve realized that he agrees to accept a kidney donation simply because he, himself, would do the same thing for others…

Also, I want to, once again, stress that the screening process is so serious and so severe that there is almost no chance for the person who was cleared to donate, to experience health issues due to donation. In fact, kidney donors on average live longer than other people, since only the healthiest people are being chosen to donate. And, of course, there is no bigger mitzvah than saving a life for whoever saves a single life, saves the entire world. I so immensely wish that I could fulfill this mitzvah myself... So, I’ve somehow managed to put my words out there. If you or someone else you know would like to test to be a kidney donor, please reach out to Renewal. Also, please say a prayer of healing for Arcady Litmanovich – Aharon ben Zoya.

Inspired by Ima on (and off) the Bima, this post is one in a series marking the days of the Jewish month of Nisan leading up to Passover, which begins at sundown on Friday, March 30, corresponding to the Hebrew date 15 Nisan 5778. If you want to play along, check out this year's #BlogExodus and #ExodusGram prompts.