THE BIG UPDATE

It has been so long since I’ve written. And – of course, the longer it goes, the more I have to say and then I’m too intimidated to even begin.

But – enough is enough. I will not go into the details as to what’s been going on – but rather just hit the highlights – so that at least you have a snapshot of my life.

HIT MY GOAL

As many of you know, since being diagnosed 8 ½ years ago, one of my main goals was to see the girls become a bat mitzvah. The likelihood that that would happen was slim, at best. But – I kept telling myself that I was going to be there for that important milestone. And I did it. I laughed harder than I’ve laughed in so long, I danced, I was surrounded by so many loving amazing people. I had my village with me – those of you who helped me through some very very difficult days. I have never been so proud of the girls. They were magnificent (of course, I’m not biased at all!)

After the guests left and the celebration was over, a sadness overtook me. I realized that I had achieved the goal that had been there for more than 8 years. My body started feeling like it was shutting down. Pain began to overwhelm me and it felt like my tumors had started to grow.

I then decided that it’s time to make a new goal.

IMMUNOTHERAPY TRIAL – PHASE 1

Fortunately, right around then, I got the call that I had been hoping for. After two years of waiting, Dr. Fisher finally had room in a Stanford immunotherapy trial for me. Because it’s a 

the side effects will be. These are unchartered waters. However, I’m no stranger to being a guinea pig, so I told them to sign me up. The biggest pain with this trial is that it requires me to go down to Stanford for treatment at least once a week – which is an awful lot of driving!

I have now been on the trial for two months. Just once week ago, I received “the call.” Following every scan and every test, I’m on edge waiting to find out what’s going on in my body. Will my life now take a whole new direction? But – the news was good. My latest CT scan showed that my tumors had either decreased in size or stayed stable! IT IS WORKING!!!

Although this is fantastic (and surprising) news, the last few months have not been easy on me physically. My bladder fistula continues to get worse, causing constant incontinence. I may soon be looking at a permanent urine bag. The idea of having 2 bags is a huge bummer, but I think it’s a tradeoff I may need to make.

I am also dealing once again with a serious infection – similar to the one that I had last spring. Fortunately, it was caught before I had to go to the hospital, so we were able to work out a system for me to give myself a daily infusion of antibiotics into my port. The goal is that after 14 days we’ll have scared this infection away – for good!

If I can kick this infection out of my body and stay on this trial – then life is great. Of course, I still have to schlep down to Stanford every week for my trial. But – that’s a small price to pay to be able to remain a part of this wonderful world.

THE SECRETARY

As you may recall, Secretary Clinton is a very important part of my cancer story. I was first diagnosed with cancer when I went to volunteer for her during the Iowa primary in 2008. Over the past 8 ½ years, I have had too many ups and downs to remember.

I have also had the opportunity to meet Secretary Clinton in various locations over the past few years. This year, I went back to the Iowa Caucus to watch her WIN it this time. I stayed with my wonderful friends, the Mandelbaums, who took care of me and Pat when I first became ill. While I was there, Secretary Clinton found out I was in town and her staff arranged for me to see her. It was a huge thrill. She was so gracious and spent a considerable amount of time finding out all about what was going on in my life. 

In addition, I got to see my wonderful Iowan oncologist, Dr. Morton, while I was there. He was the genius who connected me with Dr. Fisher at the beginning of my journey. There is no doubt in my mind that if I had any other oncologist, I would not be here right now. So – once again, thank you Dr. Morton. (On a quick side note – Dr. Morton and I have become texting buddies during the presidential debates. He’s a huge Hillary fan!)

Then, at the end of July, I had the opportunity to go to the Democratic National Convention as a guest of one of my wonderful biotech companies. Again, while I was there, I got an email from Secretary Clinton’s staff letting me know that they heard I was in Philly and she was wondering if I could meet with her while I was there. Fortunately, my amazing boss and CEO let me stay through Friday so that I could meet with her. Directly following her rally in Philadelphia (the day after her acceptance speech), I was brought back to meet with Secretary Clinton and Senator Kaine. When Secretary Clinton asked what was going on with me and the girls, I told her that it was Bat Mitzvah central at my home, since both of my girls would become b’not mitzvahs in less than a month.

She then asked me if it would be ok for her to write them a letter of congratulations since she knows what a huge milestone that is for a Jewish woman. Without hesitation, I replied that of course they’d love it. I was thrown off that she had offered to do something like this. Such a kind and thoughtful offer. And – it’s not like she didn’t have a little election looming….

Amazingly, she followed through! She sent the girls a lovely letter for their b’not mitzvah.The girls were overjoyed to receive the letter. That’s certainly not your average b’not mitzvah gift!

I was so grateful, that I sent her a note thanking her for doing this and telling her how much it meant to me. I also expressed that since I had reached the important goal of attending my girls'b'not mitzvah, I was now going to have to come up with new goals to inspire me to continue living.  I have decided that for the short term – my goal is to live long enough to see the first woman be elected President and for the long term - my goal is to see my daughters graduate from high school and go on to college.

Not expecting any response, I was completely overwhelmed when I received a beautiful letter of response from the Secretary a couple of weeks later. There was absolutely no political reason for her to have sent me this letter. I am not wealthy, I do not control lots of money that can be given to her, I do not run a labor union, heck, I don’t even live in a swing state. I bring nothing to the table. The only reason that she wrote these letters is because she is a good, caring and loving person.

Here is what she wrote:

That is who I want to be my President. I haven’t brought up politics very often on this blog because it truly was supposed to be about my cancer journey. But – because this is where my cancer journey and politics intersects, I feel the need, moreover, I feel the obligation to let everyone know how good she has been to this cancer patient. She has helped give me the will to power on.

I now have tubes and bags coming out of places all over my body. My left kidney is probably dead, my right kidney is filled with a life-threatening infection, my two fistulas are wreaking havoc with my body – but I’m here. I’m strong. I’m fighting for my life. I don’t know why I’m still alive while others have passed. But, because I’m here, I feel like it is my duty to do what I can to make the world a better place. Electing Secretary Clinton as the next President will make the world better. She brings kindness, compassion and a deep sense of humanity to the office.

This is the world that I want for my children. This is the world that I want for me. My plan is to stay around for a little longer and with your help, I will be able to hit my next critical life goals.

Hope you all are having a wonderful weekend and don’t forget to vote on Tuesday!