A New Beginning

In life, it is rare to get to work on your passion every day.  Over the past 5 years, my interest in healthcare and new treatments has exploded (I know – huge shock).  So, when I was recruited by a group of biotech companies to run the Sacramento office of their trade association, the California Healthcare Institute, it was an opportunity that I couldn’t pass up.  My job will be to represent biotech companies (like Genentech), biomedical device companies, VCs and research universities (including my beloved Stanford) before the state legislature.

Although I have loved TechNet, over the past 2 years, I have realized that the issues that interested me the most were the ones that my biotech companies were working on – enabling patients to get access to oral chemotherapy, improving the telehealth network, etc.

To have the opportunity to work full time to try to improve access to healthcare and enable companies and universities to create innovative products that will make life better for so many and actually save lives (such as mine) is a tremendous honor for me.

And, what a time to do it.  As I prove that immunotherapy plus radiation can rid my body of cancer, I will be arguing before the legislature that they need to help companies and research universities create new treatments.   

It’s hard leaving the people at TechNet – my colleagues and member companies.  But – to work every day on issues that I am passionate about – well – it really doesn’t get better than that.

In two weeks I will be starting this new adventure.  And I can’t wait.

Radiating Hope

This week has been a little insane.  I began my week by driving down to Stanford to become close friends with the Varian Truebeam radiation machine.  After meeting the phenomenal radiation tech team (the nicest folks on the planet), I settled in to my personalized body mold (we made that a couple of weeks ago).  The techs then adjusted me – taking unbelievable care to ensure that I was perfectly aligned – to the millimeter.  There was no room for error.  Upon determining that I was ready to go, they then called in the incredible Dr. Albert Koong to work his magic.  He proceeded to take multiple x-rays followed by about 1 ½ minutes of very high strength radiation.   My job was just to relax and stay still.  And – fortunately, I was able to do just that.  Everything went off without a hitch and Dr. Koong was thrilled.

Tuesday wasn’t quite so easy.  I arrived at 5:30 to discover that the woman ahead of me was having a tremendous amount of trouble.  She had tumors in her lungs and they couldn’t get her to be still enough to radiate her.  It took 3 hours of trying and they finally gave up and told her to come back on Thursday.  While this was not ideal for me (since I still had a 2 hour drive back to Davis after my radiation), Dr. Koong and I ended up hanging out and hatching all kinds of plans together.  We are going to team up to introduce legislation that could have a significant impact on research universities (like my precious Stanford) and subsequently, cancer patients.  I can’t disclose our plans yet, but once we get our strategy in place, I’ll bring you all in on it (we may need to enlist your help).

Fortunately, the amazing techs were very quick in lining me up and my radiation was quick and easy and I was able to get back on the road to Davis.  I had 3 meetings that I was hosting in Sacramento the next day so I couldn’t stay in the Silicon Valley.   (A quick shout out to my dear friends Shelley & Woody who have let me crash at their beautiful home multiple times – including twice this week.)

Following my meetings on Wednesday I drove down once again and my radiation treatment was nice and uneventful.

As for the side effects – I was primarily a little queasy the first couple of days following the radiation.  Although Dr. Koong had prescribed Zofran for nausea, I refrained from taking it.  I really don’t like taking medication if I don’t absolutely have to do so.  My third night the radiation side effects hit my stomach pretty hard, but now that seems to have subsided and my body is back to normal.

On Thursday, I was back at the Stanford clinical trials building once again for my dose of PDL-1.  So – in a nutshell, this week, we started the process of breaking up my tumors (it takes a while for the radiation to have its full impact) enabling my immune system to get to the cancer and learn what it needs to fight.  On Thursday, we gave my immune system a major boost.  It’s now time for my body to fight this disease itself.

So, when will we know if this crazy theory worked?  No one knows.  It’s never been done before.  While Dr. Kohrt was estimating between 3-6 weeks, Dr. Koong thinks it could be between 4-6 months.    Bottom line, I need to be patient.   Ugh – that’s not so easy for me. 

But – I truly believe that it’s going to work.  A Rabbi’s wife that I have been fortunate to have befriended during this journey reminded me last week of the meaning of my Hebrew name: Chava Rafaella.  Chava means “mother of all life” and Rafaella means “God will heal.”  She said “You are your name.”  And, I fully intend to live up to that name.

You Are Stronger Than It Is. Remember That.

Three weeks ago, I got the e-mail that I truly was hoping not to receive.   My latest biopsy showed cancer was in my lymph node.  I was devastated.  I’d placed so much hope in this experimental treatment that to have the cancer re-emerge was a kick in the gut.  

After a little bout of crying, I wiped the tears from my eyes and called Dr. Kohrt to talk through the results and next steps.  He laid out two options:  1) keep going with the study and check constantly to see if the lymph nodes change.  If they increase, we start radiation immediately or  2) we start radiation immediately if the radiation oncologist thinks that my body can handle the toxicity.   He didn’t hesitate to say that in his opinion, the second option is the best option.  Excitingly, this is the combo that they think will create the miracles – coupling radiation with the immunotherapy. 

When I said to Dr. Kohrt that I was surprised that he didn’t sound distressed about the cancer, his response was that he wasn't concerned at all.  He knew there was a strong possibility that we were going to find cancer in the lymph node and he had already planned a course of action.  In his mind, there were no surprises. “I only get upset when something unexpected occurs and I DON’T have a plan.”

His great attitude gave me the hope I’d needed and I told him that it appeared that I'd live to fight another day.  “Eve,” he responded, “You're going to live to fight not just for one more day, but for many many many more days."  

Just like me, you may think that cancer in my lymph node is a step backward, but it could actually be a strange blessing in disguise.  Without finding the cancer, they wouldn’t have the opportunity to incorporate the radiation.  The providers of the study wouldn’t allow it.  But now my doctors have a reason to “up the ante” and I’m all in.

About 2 weeks ago, I met with Dr. Albert Koong, the brilliant radiation oncologist who is working with Dr. Fisher on my case.  He explained to me that they’re planning to use the next generation of the cyberknife – the Varian Truebeam -  to attack the lymph nodes.  Apparently, it uses an arch of radiation to zero in on the lymph nodes.  Because of the proximity of the larger of the lymph nodes to both my spine and my bowel, they have to be extremely careful and have pinpoint accuracy.  I warned him that he was not allowed to go out drinking the night before my radiation and he even promised to get a good night’s sleep prior to my treatments.

So we are planning to have 3 days of radiation in a row –  February 11, 12 and 13 and then I’ll get my next dose of immunotherapy on the 14^th.

When I spoke with Dr. Koong, he seemed almost giddy about the opportunity to test out the theory that PDL-1 and radiation will work on a colon cancer patient.  I will be the first colon cancer patient in the world to test their theory.  Dr. Fisher wrote me a note last week about what we were about to do and at the end, he signed off, “Eve, just make me famous.”  I plan to do exactly that.

On Thursday I was at Stanford once again to get a mold made for my body to hold it still during the radiation treatment, a CT scan and a PET scan to map out my body for next week’s radiation.

But – this week is free.  I don’t have to drive to Stanford.  I can focus on my job and my family.  Ariel is in a play on Thursday night at her school.  She has been practicing her part for months.  And I’ll be there to beam with pride.  These are the moments that I am fighting for.  This is why I subject myself to treatment upon treatment.  This is why I am willing to be the ultimate guinea pig in the next potential breakthrough for cancer patients. 

As Dr. Kohrt was signing off from our difficult conversation weeks ago, his last words to me about the cancer were “You are stronger than it is.  Remember that.”