So - What's the Latest on the Study?

First, before I go into the question that I get nearly every day,  I want to extend a huge thank you to those of you who are calling, writing or tweeting the Governor’s office in support of AB 1000 (Perea).  Keep doing it!  I'm speaking at a press conference on Thursday, so perhaps you'll see me once again in the news.  Hopefully, this time we'll have a better outcome!  If you don’t know what the heck AB 1000 is, please see the blog post from last Friday. 

Also, in that post, I promised to give you the latest on my cancer journey.  Unfortunately, I still don’t have much to report.  I saw Dr. Fisher a couple of weeks ago with the hope that he’d have some news for me.   His frustration was evident as he informed me that they still had not sent my tumor sample to Genentech for testing.   Genentech came back to Stanford and told them two things:  1) they wanted to send an inspector to visit Stanford to ensure that they had the facilities to partake in the study [which I find ludicrous – it is Stanford after all] before they’ll even sign a contract or test the tumors and 2) instead of allowing 13 people from Stanford to participate in the study, they are now only going to take 2 Stanford patients.  They will only have 10 people in the study and they want to spread out the other slots to other cancer institutions.

Fortunately, George is committed to getting me in if I am eligible.  He has decided to submit my tumors along with two other patients’ tumors with the hope that two of us will be eligible.  I then asked, “how about if all 3 of us are eligible and I’m not selected?”  His response was that he would try to horse trade (yes, he used those words) with another institution so that I could get in.  Crazy.

If my tumors are not eligible, he does have a couple of other studies that he’s considering.  One of the studies is a combo immunotherapy and radiation.  However, he doesn’t want me to be in the first couple of groups of patients who get this treatment, since they will be giving either no radiation or low levels for the first couple of groups.  It won’t be until the 3^rd group that they’ll give the full treatment of immunotherapy and radiation.  He said that although he believes that there will be positive responses from the first two groups, it’s the third group where the miracles will occur and fortunately, he wants me to be in that miracle group.

Although it has been frustrating to wait and wait and wait, I do feel like I’m in the best hands possible.  I know that my oncologist is my champion.  He will do everything in his power to get me the best care possible.  I feel so blessed to have someone of his caliber and stature on my side.  He also loves the girls (and Pat) which is a bonus.  I figure that will give him an added incentive to keep me alive.

So – I’m continuing to take my chemo pills and Avastin IV.  We did end up having to change my protocol.  Apparently, my body has had too much poison running through it and was dangerously saturated.  I told both Dr. Fisher and Dr. Smith that I was tough and could handle the dosage. But, Dr. Fisher said that it was important that we do as little long term damage as possible to my system, and giving me too much chemo would result in significant long term problems.  Therefore, instead of 2 weeks of chemo followed by one week off, we have changed to one week on, one week off.  I just hope it will continue to keep the tumors from proliferating.

Today, while getting my bi-weekly Avastin drip, I received a text from George's right hand, Margreet, informing me that Stanford and Genentech signed the contract over the weekend!  Stanford will be sending my tumors to Genentech right away.  I offered to drive them from Stanford to Genentech if necessary, but I don't think they're going to take me up on my offer.  

So, here I am, in a holding pattern for the next couple of weeks – hoping that I’ll get to enter either the PDL-1 study or another exciting study before things get worse - crossing my fingers and praying.   Thank you for all of your wonderful prayers and healing thoughts as well.  It is a miracle that I'm still alive and thriving and I credit not only my amazing western and eastern doctors, but all of you as well for keeping me strong.  I am blessed to have you in my life.

Here I Am

As you all know, I did take some time off to focus on my healing.  That was a wonderful experience.  I made a real effort to rejuvenate my body and soul. It was a time for me to focus on the things that truly matter.  A poignant reminder of why this was so important surfaced during the last week of my time off…

As you may be aware, every summer for the last 6 years our family has gone to UC Berkeley Family Camp, Lair of the Golden Bear (Pat is a Haas grad).   At one point during the week, Ariel decided that she wanted to play catch and Pat was nowhere to be found.  She came to me and asked if I would play with her.  I hesitated because I truly suck at catch.  I can neither catch nor throw the ball.  I finally agreed to play with her.  As Ari and I were walking out to play, I warned her that I was terrible at catch.  She turned to me and responded “That’s ok, Mom.  It’s just for fun.  All that matters is that you said ‘yes.’”  I haven’t been able to get that out of my head ever since.  She captured what really matters.  It was at that moment that I realized that as I return to my frenzied life, that I need to remember to say “yes” to my daughters as often as possible. 

I’m now back at work and have returned to the chaos of the end of the legislative session.  I struggle daily trying to find some balance and to incorporate some of the lessons that I learned.  Ellie and I have started doing yoga together which has been wonderful for both of us.  She told me the other day that she thought I should start each day with shavasana (a short meditation) to help bring peace into my life. Doing yoga with Ellie has been one of the highlights of my efforts to change the way I live.

When I was meeting with my Rabbi this last week, he told me that my struggles to be present and enjoy each moment are at the essence of my search for spirituality.  Listening to me talk of my quest to be more engaged in the moment reminded him of the Hebrew word “Hineni” meaning “Here I am.”  This is how Abraham responded to God to declare that he was fully present, both physically and emotionally.  

I now repeat the word “Hineni” frequently throughout the day to remind myself that I need to be present for the moment – not focused on the past or future (which is difficult for this “to do” list addict).

Today is a good day.  I’m at the pool at our club, listening to Pat read a Sherlock Holmes story to the girls.  Wonderful friends are coming to dinner.  I remain strong regardless of the cancer within.  I remain able to actively speak not only on behalf of the tech industry but also on behalf of cancer patients. 

And - when Pat is done with this story, I’m going to jump into the pool with the girls regardless of the fact that I shouldn’t be in public in a swimsuit. 

Hineni

CALL TO ACTION – Help Ensure Access to Oral Chemo!

I promise to write this weekend about the latest and greatest on my cancer treatment.  However, right now, I have an urgent request on the policy front.

In California, I have been working on a very important piece of legislation, AB 1000 (Perea).  This legislation requires health care service plan contracts and health insurance policies which already provide coverage for cancer treatment, to provide coverage parity for prescribed orally administered and intravenous anti-cancer medications.  This is critical for many patients who have been diagnosed with cancer.    Honestly, when I first heard about this legislation, I was shocked that oral chemo isn’t covered by some health plans.   Therefore, I vowed to do everything possible to enable all cancer warriors to have access to the best possible treatment for them.

Cancer will strike nearly one in two Californian’s born today at some point in their lifetime.  In order to prolong and save lives, biotechnology companies continuously research and invent the best possible treatment for the various forms of cancer.  More than 40 oral anti-cancer medications are currently available to treat 54 different types of cancer and there are approximately 100 oral anti-cancer medications under development. 

It is through this research that discoveries are made that will ultimately lessen healthcare costs to the state.  Unfortunately, because some service plans do not provide coverage parity for oral chemo, the high out-of-pocket costs of the oral chemo prevent about 25 percent of cancer patients from filling their prescriptions.  If cancer patients do not comply with their chemo protocol, their lives are placed further at risk.  Providing access to the drugs that biotech companies create not only encourages greater discoveries but also can be the difference between life and death for a cancer patient.

As you know, I have taken many different forms of chemotherapy, but the one that has enabled me to have the highest quality of life resulting in me being able to spend quality time with my children and remaining an active participant in the workforce, has been my oral chemotherapy drug, Xeloda.  While the equivalent IV drug would have forced me to travel to Stanford Cancer Center 8 times/month for infusions, in addition to my many other cancer-related doctor appointments, I am now able to spend that time with my family and at my office, living a more normal life.  I cannot overstate the importance of this to my life.

People have asked me if this bill impacts me.  At this point, I have not been faced with an insurance company who has been unwilling to cover my oral chemo.  I am fortunate. Anthem Blue Cross covers my oral chemotherapy enabling me to lead as full a life as possible.  Unfortunately, so many others do not have that option.  It is so important that each cancer patient have access to the drugs that will most effectively treat his/her type of cancer and enables the cancer patient to have the best quality of life. 

I am glad that we have been able to get this critical legislation passed through the Assembly and Senate.  However, it now is sitting on the Governor’s desk waiting for his signature (or veto).  I, on behalf of TechNet, and our friends at American Cancer Society, Susan G. Komen, Multiple Myeloma Assn, California Medical Association, BayBio, Biocom, California Healthcare Institute and many others are doing everything possible to convince the Gov. to sign this important legislation.  Unfortunately and very disappointingly, Kaiser and Blue Shield are fighting this hard and have hired a bunch of high priced lobbyists to influence the Gov. to veto the bill. 

Next week I’ll be speaking at a press conference on this legislation.  I’m hoping that we’ll be able to stand up and laud the Governor for his signature.  However, I’m very very nervous that this won’t be the case. 

I am therefore asking everyone that reads this blog to call, write or tweet the Gov’s office and urge him to sign AB 1000.   This is how you do it:

Call:  916-445-2841

Write:

Governor Jerry Brown

State Capitol, Suite 1173

Sacramento, CA 95814

Tweet:  Here are some examples of what you can tweet:

@jerrybrowngov Pls sign #AB1000 so cancer patients can get oral chemo pills for the same cost as IV chemo. #beatcancer #CaLeg

The FDA has approved 42 oral chemo meds for 57 different cancers. @JerryBrownGov please sign #AB1000 so insurance covers these meds. #CaLeg

@jerrybrowngov Cancer patients in 20 states & DC have access to oral chemo pills thanks 2 laws like #AB1000. Pls help us #beatcancer. #CaLeg

If you would like a fact sheet or any other information about this bill, just let me know.  Thank you for helping so many cancer patients who are struggling with this disease.