Irene Johnston

First post: Jul 2, 2018 Latest post: Jul 11, 2018
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April 6, 2018
Hi All,

Michele here. I figured you might all want a more detailed update of what is going on with my mom.  This email is long, but I wanted to make sure you had all the information.

First, let me give you the background information. Shortly after Seth's bar mitzvah in September 2012 my mom was diagnosed with stage 1B endometrial cancer.  She made the decision to have a complete hysterectomy, as well as three rounds of optional radiation. Everything was fine until about a year ago.  Last May she started having some stomach pain that was unexplained. Her doctor had her do a battery of tests, and it was determined at that time that she had a large tumor that was wrapped around her aorta (the main blood vessel to your heart) It was situated lower than her heart, somewhere near her kidneys, and determined to be inoperable.  They also mentioned that there were nodules in her lungs, but it was not clear whether or not the nodules were malignant or benign.  They were very small.  The tumor was tested, and it was determined to be a gynecological cancer, a remnant of the endometrial cancer from 2012.  She started on oral hormone therapy, and during a CT scan in November the tumor had shrunk between 30 and 50 percent.  The hormone therapy was working. She was scheduled for another CT scan in May.

Fast forward to the beginning of March. She started to feel really bad, and after consulting with her oncologist, she went for another CT scan.  This scan showed that the tumor around her aorta had stopped shrinking, and that the nodules in her lungs had started growing.  Additionally she had inflamed lymph nodes, and the diagnosis was that the cancer had spread.  Instead of continuing on hormone therapy, the oncologist decided to start her on chemotherapy.  Before she could begin chemo there were a number of blood tests that were completed.  These blood tests showed significantly decreased kidney function.  She needed to have her kidney function improved before she could start chemo.  On Friday, March 30th we met with a urologist who determined that the lymph nodes were pressing on her ureters, the tubes that run from the kidneys to the bladder. This caused her kidneys to swell, and was making her feel terrible. His recommendation was to insert stents into the ureters, an outpatient procedure.  On Wednesday, April 4th we went to her pre-op appointment, and she had some blood work done.  The results of her blood work showed that her kidney function was not great, and that her electrolytes were off.  The doctor who did the pre-op check called that evening, and told us to go to the ER so they could admit her. Went went around 7:30 (calendar:T1:7:30), and at 8:30 (calendar:T1:8:30 )they admitted her.  During this time her blood pressure was increasing, as was her pain. They put her on an IV to try and get things back in balance.

Yesterday around 1pm (calendar:T1:1pm) the doctors decided that her kidney function was a more serious issue, and that they needed to do a procedure to relieve the pressure. They took her to surgery, and inserted a tube into each kidney that drains her urine externally from her back. She is recovering well from the surgery, however, her left kidney is not putting out much urine, and as of last night her kidney function was still not great.  

She will remain hospitalized until her kidney function improves, and she can get up and move around on her own.  Hopefully this will be tomorrow (calendar:T5:tomorrow), or Sunday at the latest.  She is currently scheduled to begin chemo on Wednesday afternoon, April 11th.  Chemo will be an infusion of carboplatin, done every three weeks, for a total of six times.  This is the regimen, and once she has this treatment, this will likely be the only chemo she has. The cancer has metastasized, and is going throughout her lymph system, as well as in her lungs.  The tumor around her aorta is not going away.  The chemo will extend her life, but is unlikely to cure her.  I am sorry to be blunt, but I don't like to lie about things, and I think you all deserve to know what's going on with her.

I am here with her, and I promise to let you know what's going on as I learn more.  Feel free to reach out to me by telephone or text, 415-203-5135, email ( ( or on Facebook (Michele Glazer Jones-Siegel)  At the moment she does not feel up to talking with people, and is not on her computer checking email.  If you want to speak with her on the phone, please let me know, and I will work with her to arrange a good time to talk.

If everything goes well, we plan to be in Indy around Memorial Day weekend.  I will give you more details as we make our plans.  Feel free to reach out if you have any questions, and please forward this to anyone I may have missed.

Love, Michele

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