Wednesday, June 5, 2019

ScanAnxiety, how to bench Gomel (Prayer said after recovering from a serious situation) and IN REMISSION

Last Chemo on May 20
Ever since my surgery, I have had Scan Anxiety.  I keep hearing the theme song from Mel Brooks’ High Anxiety movie play in my head for the last two weeks. For my younger chevre here is the link to High Anxiety and yes it is an earworm. Fair warning, it is even catchier than Old Town Road and no it is not about getting HIGH either. 

I had my last scheduled chemo 2 weeks ago and during those weeks all I could focus on, besides the song, was the next step, the CT scan. That scan would let us know whether the cancer was still present in my body.

My scan Anxiety was at an all time high over the past two weeks.  I know many cancer survivors (and I will be part of this group) continue to have CT scans for months, years, and possible decades after their initial diagnoses. I can only imagine how many times those people would have played that song in their head if they had read my blog.
Just change the word high to scan because scan anxiety works.
Well it's the high anxiety
I'm a victim of society, It's my high anxiety
Getting to the best of me, Sometimes I feel like I'm gonna explode
When I'm approaching total overload, I know that when I'm having a panic attack
To duck and cover cuz I can feel it coming, You know I wish that this was over and done
Heart pounds I can feel it escalating, Well it's the high anxiety

While waiting for the phone call from my doctor I was discussing what to write for a positive scan and/or a negative scan, Arthur said, "negative scan? We are only writing the Victory Speech!"

This morning when my phone rang and it was my doctor, the theme song was blasting at full volume. I heard the words “you are in remission and NED, “No evidence of disease”, I cried. Those who know me, may not think this is surprising. I cry when I speak about the Holocaust, I cry when I send my students off to OSRUI for a summer of Jewish camping, and I may have cried once watching “Long Island Medium” with my daughter. The strange part is that through this journey, I have not really cried about having cancer. Anxiety impacts your body in various ways, and perhaps my Scan Anxiety was acting as a gate. But when I heard the words  “You are in remission”, the Scan Anxiety gate broke and I cried.

Me in the wig
What’s next you may ask?  I will be receiving monthly transfusions of Avastin, which is a blood vessel growth inhibitor.  I do not expect there to be MANY side effects, but I will not know for sure until my first transfusion after June 10th. I hope my hair will grow back.  I cannot say that my Scan Anxiety has disappeared completely, as this disease is notorious for recurring, there will be more CT scans in my future, but for now I can turn High Anxiety down to a 6 or more likely a 7. I will also continue to consult with Sharsheret, the Jewish organization which has provided me with information, a mentor and just kept my head on through this whole process.

If you read the title to this blog post, you should be asking, what is Benching Gomel? What situation would be "serious"?

Birkat Hagomel (pronounced beer-KHAT hah-GOH-mel),” is commonly said after recovering from serious illness, but can also be recited in gratitude for completing a dangerous journey.
This blessing for deliverance is typically recited in the presence of a minyan, or prayer quorum, often in the synagogue following the reading of the Torah.
Birkat Hagomel in Hebrew (courtesy of Sefaria)
בָּרוּךְ אַתָּה ה’ אֱלהֵינוּ מֶלֶךְ הָעולָם. הַגּומֵל לְחַיָּבִים טובות. שֶׁגְּמָלַנִי כָּל טוב
Birkat Hagomel in Transliteration and English Translation
Baruch ata Adonai, Eloheinu melech ha-olam, ha-gomel t’chayavim tovim she-g’malani kol tuv.
Blessed are You, Sovereign of the universe, our God, ruler of the world, who rewards the undeserving with goodness, and who has rewarded me with goodness.
After the recitation of this blessing, the congregation responds:
Mi she-g’malcha kol tuv, hu yi-g’malcha kol tuv selah.
May God who rewarded you with all goodness reward you with all goodness for ever.
My plan is to bench Gomel this weekend.  I can’t tell you how grateful I am to reach this day.
For now, my physical road to remission has reached a place where I can take a breath. The work I’m looking to start on now will involve some spiritual healing. Sometimes that can be a longer road, but I know that benching gomel is the first step I want to take.
At Passover

Saturday, May 11, 2019

Counting it’s that time of year

My actual sheets I used at camp 50 years ago, iron on Labels!
My last chemo is currently scheduled for Monday, July 1! I can finally start my countdown. With any luck, by the time I arrive at my ‘camp home,’ Olin Sang Ruby Institute, on Monday July 15, I will be done with this course of treatment. Well, “done” is a figure of speech,  I will continue to get a year of monthly infusions of avastin, an immunotherapy drug that helps prevent new tumor growth.

And what timing! This is also the time of the year when we count the Omer:

The period between Passover and Shavuot is called the “Counting of the Omer” (Sefirat Ha'omer). Omer means "barley sheaf" and refers to the offering brought to the Temple on the second day of Passover.  Starting from that day, the Torah also instructs that “you shall count off seven weeks. They must be complete: you must count until the day after the seventh week — 50 days” (Leviticus 23:15-16).

For years at my synagogue, Lakeside, we have counted the Omer with cereal boxes which are eventually donated to local food banks.  We put up one box of cereal for each day of the Omer: on the first day one box; the second day 2 boxes; and so on through 49 days.Not only did our cereal box counting method create a great visual of the Omer’s journey, it presented a real challenge to keep the whole thing upright. Journeys, as I’ve experienced recently, are all the more rewarding when they’re filled with challenges.

By Shavuot, when we celebrate receiving the 10 commandments, we had 1225 boxes. And let me tell you, our area food banks are very happy to watch that mountain of cereal come in the door. All of us parents know how expensive cereal is and it’s one thing food banks always need.  

We were not able to have our cereal drive this year, so if it moves you please think of buying some cereal, (the good cereal, that YOU like  to eat, nothing generic, unless you eat generic cereal) and donating it to your local food bank. If every person who reads my blog bought 2 boxes of cereal we would almost make 1225. Some of you *more frequent readers* could buy 3 boxes and we would be on our way.
Cereal boxes from 2018 and the magic door which brought different characters to our school!

Just as constructing our cereal pyramid was sometimes a challenge, as I begin my countdown, I have realized that there will  probably be *stacking challenges* in my journey. Those challenges could come in the CT scan before I go to camp, or they could come in the scans that are going to be a regular part of my life from now on. Don’t worry, I will keep everyone posted.  

I am sure that I could do some gematria here.  In gematria (a form of Jewish numerology), for instance the number 18 stands for "life".  THIS is the reason why you give denominations of $18 at B’nai Mitzvah, Wedding and other simcha recipients to stand for life!   I have never been much of a numbers person; in fact I hate math and even sudoku. All I know is that I have 3 chemo sessions left, for a total of who knows how many hours of treatment. And… That’s enough gematria.

I do, however, love midrashim (stories about Torah) and here is one for you as we wait for Shavuot on June 8-9, 2019.

When God was looking at different nations of the world to give the Torah, they all wanted to know what was in the Torah before they accepted the law.  It was only when God offered the Torah to the Jewish People that they realized its potential by saying to God, “Na’aseh V’nishma, “We will first obey and do, and then understand and listen,” (Shemot 23:7).  I have always said that Na’aseh V’nishma is the Ehrlich family motto. I am usually referring to myself as God and my law should be obeyed and then understood, obviously.

I realize now these words from the bible have become my personal motto. I’m not a doctor, but I trust my doctor’s and his team’s guidance and follow the regimen they have prescribed. And like the Jewish People receiving the Torah, I have first “done,” while I work to understand everything my body is going through. We talk about faith in an abstract sense frequently, but this is faith in its most concrete. I can’t say it’s been fun, but it’s added a layer to my relationship with Judaism.

Ehrlich's and one Leiter who Na'aseh V'Nishamah
I look forward to seeing many people over the summer.  Lakeside will soon be transitioning to Makom Solel-Lakeside over the summer and by the Fall our offices will be at the new campus.  See you at OSRUI, Lakeside or Makom Solel Lakeside! Now back to the rest of the Ehrlich’s and one Leiter obeying me, then figuring out why...

Monday, April 1, 2019

Slogging through the Chemotherapy: It’s like enduring and then SUCCEEDING in Hebrew school

Tuesday March 12 was the first  day of my new chemo regimen. In this new regimen, I receive two types of chemo at once, including IP chemo which goes straight into my abdomen. This chemo is 2 weeks in a row and includes an extra day of IV hydration.  I have not written a blog because, as the youths would say, this new chemo is “WOOF.” and has knocked me off my feet. Last night, as I lay awake, I couldn’t stop thinking and then it dawned on me: it is like Hebrew school.
First day of Chemo

YES, HEBREW SCHOOL. My first chemo was not unlike my Kitah Aleph class.  I was full of anticipation: nervous about what would happen; how long would it take: and if would it hurt me.  After my Hebrew School class, I mean chemo session, I I was like “YES, I can do this.” It was a whirlwind, but I survived it… Not unlike Kitah Aleph, where in the span of one year my students learned to read Hebrew, understand over 100 words, and learn to sing our basic prayers. I hope too that my Kitah Aleph students felt like they could do anything after their first year of Hebrew School.
First day of Hebrew School 2017

I continued on with my treatments, just as my students continue to Kitah Bet and Gimmel classes. We all had a better idea this time around of what to expect, but both me and my students wonder when we would see the end.  I knew I was getting better and some results were showing progress. There were times, however, where I couldn’t see any real results and I was also wearing down with every new treatment. Like my students, if we want to see results we need to complete the assignments. For me, that means attending all chemotherapy sessions.  I must keep up my health and these appointments help me do that. My family (or the editors of my blog) would certainly not allow me to miss an appointment just because I just didn’t feel like going.
First day of Hebrew school 2017
In Bet and Gimmel, differences between students become more apparent. Some students want to speed up the learning, while others are just trying to hang on.   They know they are making progress, but don’t always like coming to school on a regular basis. Like mine, I know that their families’ play a huge role in keeping them on track, especially their parents, or perhaps an influential sibling, encourage, cajole, and make sure they get to school on time every week. I hope these families have made the pledge that Hebrew school is just as essential to their families’ spiritual health as chemo is essential to my health as a cancer patient.   

Now, when you reach Dalet, you can see where you are going:  you have a B’nai Mitzvah date, you might be planning on taking Hebrew in one of our nearby public High Schools, or you might just be happy to know the date of Hebrew school Convocation.  We always used the name CONVOCATION, to make sure our students KNOW they weren’t GRADUATING, from Hebrew school, but we hoped they would go on to Confirmation and maybe continue using Hebrew, at least at synagogue and of course camp.  
Confirmation 2016

I would say that I am in the Bet and Gimmel of chemotherapy.  I don’t have my end date and I know I have to get through about 8 more hard chemo appointments scattered over 9 -12 weeks.  Monday of this week my chemo was canceled due to a slight infection. Nothing is guaranteed. Just like a snow day, I was happy not to have chemo today, but know that I will DEFINITELY have to make it up and set up new calendar dates. Because I am no longer in Chemo Aleph, I have a little more working knowledge to handle these ups and downs.
As always the whole family thanks everyone for their day to day kindnesses of bringing us meals, checking in on us, sending cards, and doing mitzvot in my honor.  There are lots of chances to do mitzvot and, as we get closer to Pesach, if you are in Chicago check out Maot Chittim.

Need more info:Click here
Hebrew school and Chemotherapy are not unlike a marathon; you need training and must stick with it until you have completed the task.  To that end, I am trying to stay healthy, but make it into work at Lakeside as often as I can, especially for Adult Enrichment on Sunday mornings!  Hope to see you there!
Last Chemo, representing OSRUI and reading book for book group!

Monday, March 4, 2019

Do I love you? Do I WHAT?

Junior Year Abroad 1979 Hebrew University

I love watching musicals! I have watched them on broadway, at our local High School, middle school, camp; you name it. The quintessential musical, Fiddler on the Roof, I have probably seen over 50 times.  It was one of the first musicals my parents took us to see and Tevye was played by Herschel Bernardi.  

All the songs in this production are very recognizable including the dubious love duet song by Tevye and Golde:
Tevye: Do you love me?
Golde: Do I what?
Tevye: Do you love me?
Golde: Do I love you?
With our daughters getting married and this trouble in the town,You're upset. You want out. Go inside. Go lie down.Maybe it's indigestion.
Tevye: Golde, I'm asking you a question. Do you love me?
Golde: You're a fool!
Tevye: I know. But do you love me?
Golde: Do I love you? For twenty-five years, I've washed your clothes,Cooked your meals, cleaned your house, Given you children, milked the cow. After twenty-five years, why talk about love right now?

On March 4th I will turn 60, I have been married 34 and ½ years to Arthur, who will also turn 60 at the end of the month (on March 29). When you get married at age 25 you don’t really think about what will happen at age 59 if you are diagnosed with cancer.  Arthur and I met Junior year abroad  of college at Hebrew University in Jerusalem. He moved to Chicago so I could be near my family and I have to say now, I could not ask for a better partner, husband, father, and friend as we face this next chapter together. Arthur has rearranged his schedule numerous times to be with me at most of my chemo appointments, doctor appointments, procedure appointments and whatever has needed to be done.

He has told me I look good in all my new styles:  my new wig, my new scarves, and even with my shaved head.  I will say that he has been appreciative of all the food you have provided for us whether it came fr, or made sure we could we can eat from a lovely local restaurant.  

Now I can’t say that every day is argument free or without our disagreements, we are married after all.  In fact you can tell how things are going in our family by how many times I am forced to “google” the answer to one of our disagreements.  Occasionally, Arthur will admit he is just trying to make me google answers to our discussions at least once a day.

When I think back my our wedding on September 2nd, 1984, I remember how my professor/Rabbi Nathaniel Stampfer married us in a very traditional service.  I was actually surprised when only Arthur said the Jewish formula of: Harei at mekudeshet li b’taba’at zo k’dat Moshe v’Yisrael ("Behold, you are consecrated to me with this ring, according to the law of Moses and Israel"). When the bride consents, through her silent acceptance of the gift, a marriage has taken place, even if all other familiar aspects of the wedding are missing.

Vanessa and Arthur September 1984
I was taken off guard when I did not say that exact sentence back to Arthur but instead, Ani L’Dodi V’dodi Li, I am my beloved and beloved is mine.  I am still trying to remember if Rabbi Stampfer asked us if we would love each other through sickness and health. I am pretty sure he said these words to us and I can tell you that if he did not, we have lived out this truth for the past 6 months and feel confident and lucky as we look toward our future.  

Tevye: Then you love me?
Golde: I suppose I do.
Tevye: And I suppose I love you, too.
Together: It doesn't change a thing, but even so,
After thirty five years, it's nice to know

Lital and Cole August 2016

After almost 35 years of marriage, 4 children (one son in law) a fulfilling job and a wonderful life I find myself a very lucky women.  A Jewish greeting to someone who is having a birthday is: Ad Meah V’esrim, (May you live until 120, (the age of Moses) ). I think it is very significant that, for this birthday, if you add Arthur and my age together you get:  Meah V’esrim, 120!

Sunday, February 17, 2019

HGTV and Cancer

Ethan home for Shabbat
I have been watching many different HGTV (Home and Garden TV) shows these past 3 weeks since my surgery.  You might ask… What is the attraction of these shows and why were they so soothing as I recuperate? I think the answer lies in the reality that at the end of the 30 or 60 minute show, whatever started as a mess, or the participants not having a home, ends with a conclusion: a beautiful new home or a new home in a new place that fits the protagonists’ needs perfectly. They call in specialists like plumbers and electricians, and no one can stump them; they always fix the problem before the end of the show.  At the end of every episode, everyone is happy, in a new place and ready to move on with life.

Lital helping me to Marie Kondo my closet
When you have cancer, if only everything could be “fixed” in 30, or 60 minutes.  If only all your specialists and doctors had the definitive answers for you, and if only shiplap and exposed brick kept your white blood count steady.  I have all the faith in the world in my doctor, who is also my surgeon. We have discussed the options that I can take and here is what my show will have in store for the next month or so:

Wednesday, February 20th I will have chemo again, just like the 3 chemotherapy sessions I had in December.  I have elected to not use the digni cold cap anymore and, like the Property Brothers knocking out non-structural walls, the top of my head will be more “open-concept” as I  lose the hair that I have left in the next month, never mind my eyelashes and eyebrows. After this week I will have another port put in my abdomen and I will begin a regimen of IP chemotherapy. I’ll spare you the details, but in HGTV terms… We’re eliminating some unnecessary pipes, as we update this house’s plumbing.

Intraperitoneal (IP) chemotherapy (from The American Cancer Society)
In IP chemotherapy, the drugs cisplatin and paclitaxel are injected into the abdominal cavity through a catheter (thin tube). Giving chemo this way gives the most concentrated dose of the drugs directly to the cancer cells in the abdominal cavity. This chemo also gets absorbed into the bloodstream and so can reach cancer cells outside the abdominal cavity. IP chemotherapy seems to help some women live longer than IV chemo alone, but the side effects are often more severe.
Even after research and talking with my Doctor I am not sure how I will react to this new protocol.  Hopefully my “house” will be fixed and everyone will love it (not list it)! Yes, I know people think this house has good bones and a good heart. That’ll stay the same while , we get rid of the danged asbestos...  If I need a specialist or 2 I will not hesitate to call them and make sure to make some adjustments. And if the general contractor can’t get his plumber and inspector here on time there’s gonna be hell to pay. I will go into this next stage with strength, your good wishes, and Chip Gaines’ toolbelt/my usual optimistic outlook on life.  

February 10

If you want to visit just give me a call.  Please remember that this form of chemo compromises my immune system, so I appreciate phone calls, and if you want to visit, please call before you get in your car. We’ve all loved all the meals you have sent, along with the flowers and well-wishes. All of us can’t thank you enough; your care has really increased our curb appeal (that’s an HGTV joke, really not sure if it makes sense)  I will not be out in big crowds, but feel free to call me. Stay warm and hopefully the snow will stop soon!

Wednesday, January 23, 2019

What a long strange trip it has been. Jerry Garcia

At Devil's Lake, Wisconsin at the top!
Mosh Bet 18
Last summer when I spent 2 weeks at OSRUI my unit took tiyulim, trips, every other week. These are not trips to the museum, these are rock climbing, hiking, biking, and canoeing trips. I went on the rock climbing trip with more than a dozen high school aged chanichim, or campers. These trips take a lot of preparation and planning, which falls on the shoulders of our madrichim, or counselors.  Everyone must work together to make it a successful tiyul. We cook together, hike together and of course hang out together. I had a good time. I especially enjoyed hanging with all the campers. We talked about the books they are reading, games they are playing, and how they can get cool stickers for your water bottle. In hindsight, I was pretty anxious for this trip, but in the end, everything turned out great. Without the support of the madrichim and even the chanichim, I am not so sure I would have such a positive outlook on this journey.

As I get ready for the next part in my cancer treatment, I realize there is connection between my camp journey and this new, slightly more medical, journey.  Next Tuesday, January 29th I will have surgery. This comes at the halfway point (as best we have planned) of my cancer journey, following 3 rounds of chemotherapy. There’s not a bone in my body that would claim this journey has been easy, but  with the support of many people working together, these past few months have been a little more bearable. Just like our madrichim took on the responsibility of planning, many of you, reading this blog today, have taken on the task of cooking meals, sending thoughtful cards, and making sure I get in my walking. In this next, surgical, stage I will have a  full hysterectomy and perhaps a bit more.

Someone asked me if I was afraid of what I’m about to go through and the answer is “no.” I am, however, anxious as I look into the future. I am a person who is used to planning, controlling, and then doing some more planning.  But as I prepare to let go of some of that, I know, once again, that I will have the support of those who have helped take on various responsibilities over the course of this journey. It will not be easy to just let go, but after talking and conferring with other people who have had this surgery I know that is what I need to do.

What I now know is that I will be in the hospital for 3-7 days and that I will be recovering at home for well, let’s just say, a while. I have known since the beginning that there would be more chemo in my future, but I’m working to accept that I cannot control the chemo plan will take shape. I am planning, however, to be at camp this coming summer, and with the support of my various teams I know I will make a recovery to work with my madrichim, chanichim, and faculty in Kallah Gimmel 2019!

Here are some other things I do know (I have to be in control somehow!):
Me in the wig
I have a wig now and wear it for special occasions, including leading t’filot, services, or going to parties.  I can’t imagine it will be that comfortable in the summer in the “natural air conditioning" of 600 Lac La Belle Drive we all love.

I still have some hair, but I am not sure the cold cap is in my future. Even with all the support, it still does not change the fact my head is set to a temperature of 32 degrees for about 7 hours! I will keep you posted.  

I continue to work at Lakeside and volunteer for both OSRUI and ARJE and thank everyone who has been so supportive as I make my way through this cancer journey. Not only do I love the work I do, it has been the distraction I need so that my life is more than doctors appointments, tests, and time in that cap.

On Tuesday we will post on our Lotsa helping hands site and will give updates.  My whole family thanks everyone for their support and will let you know when I am home and seeing visitors.  I know that I have your prayers and good wishes as I go into surgery.

To bring this full circle… When I went rock climbing in the summer I was very happy to get to the summit and even happier to get back to the campsite.  Just like I was ready to be off the mountain and back in camp, I will be happy to have the surgery behind me next week and look forward to saying Birkat HaGomel as I enter my journey of recovery. To this, you may ask, ‘what is benching Gomel?

Birkat Hagomel (pronounced beer-KHAT hah-GOH-mel), sometimes known as “benching gomel,” is commonly said after recovering from serious illness but can also be recited in gratitude for completing a dangerous journey.
This blessing for deliverance is typically recited in the presence of a minyan, or prayer quorum, often in the synagogue following the reading of the Torah.

Birkat Hagomel in Hebrew (courtesy of Sefaria)

בָּרוּךְ אַתָּה ה’ אֱלהֵינוּ מֶלֶךְ הָעולָם. הַגּומֵל לְחַיָּבִים טובות. שֶׁגְּמָלַנִי כָּל טוב

Birkat Hagomel in Transliteration and English Translation

Baruch ata Adonai, Eloheinu melech ha-olam, ha-gomel t’chayavim tovim she-g’malani kol tuv.
Blessed are You, Sovereign of the universe, our God, ruler of the world, who rewards the undeserving with goodness, and who has rewarded me with goodness.
After the recitation of this blessing, the congregation responds:
Mi she-g’malcha kol tuv, hu yi-g’malcha kol tuv selah.
May God who rewarded you with all goodness reward you with all goodness for ever.

We will let you know when we are benching Gomel. Just as your assistance along this medical journey has been indispensable, your prayers along this recovery journey will be just as important.