One year is a long time: May 20, 2019 my last Chemo, Anniversary of my Last Chemo

Last Chemo May 20, 2019

The minhag (custom) in the Infusion unit is to ring a large bell three times when you complete your last chemotherapy cancer treatment.  During this time, I had to practice social distancing, avoiding hugs and close contact with others. Who knew I would have to engage in social distancing and self quarantining all over again one year later due to COVID19? 

Most of us have now had some type of experience with sheltering in place, which allows people to have empathy for the type of anxiety those of us who are immunosuppressed feel when going into crowds.  All of us are now on alert in case we get too close to other people when we are doing even the most mundane tasks and errands, including going to the grocery store, getting gas for our car or going to work.  Think about doing these same errands when you are immunosuppressed and your senses go on red alert when someone gets too close to you, and without a mask. It is not an easy task.

At Spertus Leadership Certificate Program in Jan 2020

As for me here is my current health update, I have received an infusion of Avastin every 3 weeks for the past year with very little side effects.  I do feel tired but that could be chalked up to many different things.  These infusions seem to be working and I will take them for the time being.  I am carefully monitored and although they are not chemo, Avastin is still very toxic and my blood levels are checked every time I have an infusion.  But it is now been 12 months to the day with No Evidence of Disease.  My doctor told me that is the platinum standard for those who had ovarian cancer!!

I was so happy to be able to visit my granddaughter, Esme, in Washington DC, when she was born.  I hope to drive back to DC this summer as our summer camp, OSRUI will not be open due to COVID19.  At least last year after months of being in seclusion I looked forward to being at camp for 2 weeks.  I can only begin to imagine how our campers and madrichim must be feeling at this time with no summer camp this year.

As we look to the 2020 Summer of Covid19, rest assured that I will not be physically attending any crowded venues, including Religious events, but that is a topic for my next blog.  Thank you to everyone who has continued to check in on me and for all of your thoughtful words.  We know the Jewish value of Pikuah Nefesh, saving a soul, is like saving the world.  Thank you for staying inside and stopping the spread and saving the world. It is so important to not infect those in our high risk communities of which I am a part. I hope to “see” you soon on zoom, facetime or from at least 6 feet away.

Update: My family surprised me with a beautiful powerpoint and filmed skit for my CancerFreeversary. It was beautiful, moving and filled with humor.  I am truly blessed.

The Journey begins

It has been a whirlwind week, so I thought I would bring everyone up to date.  First chemo was Wednesday and it went well. I don’t have enough praise for all the nurses, CNAs  and other hospital staff who helped me through this first day of firsts. I wonder, is that a Shehecheyanu moment?  I will add some prayers next time I am in the chemo chair. We certainly add Shehecheyanu to the first night of Hanukkah which was Sunday December 2!

Shehecheyanu: Blessing for Beginnings

This blessing expresses gratitude for experiencing a new or special occasion, and is said whenever we do something for the first time in a calendar year. It can be recited on calendar milestones (for example: a birthday, the first night of each Jewish holiday) and other “firsts” (for example: tasting a new fruit, eating vegetables from your summer garden, wearing a new item of clothing, starting a new job, and dropping your children off for a new school year). (And I guess at your first CHEMO?)

Baruch atah, Adonai Eloheinu, Melech haolam, shehecheyanu, v’kiy’manu, v’higiyanu laz’man hazeh.

Blessed are You, Adonai our God, Sovereign of all, who has kept us alive, sustained us, and brought us to this season.

The most challenging part of chemo for me, so far, is the  Digni Cap. It is a new technology I am trying out. Here is how it works:

Scalp cooling is a proven approach to reduce chemotherapy-induced hair loss that has been used successfully by thousands of patients worldwide. They cool my scalp to a freezing 32 degrees. There is a built-in security sensor to ensure my scalp temperature always remains above 32° F/0° C.  

Freezing in in my Digni Cap

The cap was donated to the hospital by a former cancer patient. Putting on the cap lengthens my chemo by about 2-3 hours.  My motivation for trying this is for my youngest son, Ethan’s, graduation. He is graduating December 16th from the University of Wisconsin with a B.S. in computer engineering and computer science.   Hopefully, the Digni cap will allow me to still have hair for this special (shehechiyanu) moment and will be sure to share pictures! If after graduation I find the digni hat a little TOO challenging I may go without out next time.  For now it’s on!

It is still business as usual outside the hospital. I am working at Lakeside, doing a little walking to keep up my strength and taking care of myself.  Next chemo is after graduation and we will see if the steroids will again course through me like they did last week.  

The response to my blog and my news has been overwhelming.  I am so thankful for all of my communities and of course my family as it will take a village to shepherd us through this journey.  Our lotsahelpinghands site has already brought us dinners which are not only helpful, but delicious..  There will be more dates added as time goes on. If you have trouble with this site you can email Lital directly and she will help you out.

Many of you have asked for my Hebrew name to add to your  Mishaberach lists.  Here it is:

ונסה בּת משה לאה ויהושע

12-2 at Lakeside with Cantor Katzman

Vanessa Bat Masha Leah V’Yoshua.  It’s a long story on why Vanessa but that is for another post.  

I want to thank everyone who has reached out to me and I hope to get back to you over time.  I love reading your beautifully written messages and it certainly raises my spirits. Ok, sometimes if I read too many I cry, but it’s still so beautiful to read.  I look forward to seeing you, running into you and hearing from you.

Chag Urim Samaech

Have a wonderful Hanukkah!

Who doesn't love Radio Hanukkah?