Cancer Camp

Today, Pat and I joined the ranks of parents who sadly say good-bye to their children as they head off to sleep-over summer camp (I know that some parents aren’t so sad to send their kids off….but since we haven’t hit teenage years yet, we were actually sad.)  This is a very special summer camp – it’s called Camp Kesem and it is a camp designed for children who have a parent who is currently battling or has fought cancer.  It is located in the mountains near Santa Cruz and is supposed to be spectacular.  It is largely supported by LIVESTRONG and is a weeklong camp that is free for the children.

Interestingly enough, when we were trying to figure out our summer plans, I had tried to convince the girls that they should go to Girl Scouts overnight camp or a Jewish overnight camp, but they had absolutely no interest in going.  But one day, Pat took the girls to the Davis Farmers’ Market where there happened to be a camp fair going on.  When Ellie & Ariel met the kids  (UC Davis students) running Camp Kesem and heard about the camp – they were extremely excited and called me immediately to beg to go.  I was nervous about sending them – since I realized that there was the distinct possibility that some of the other campers were dealing with very sick parents or perhaps even had a parent who had died of cancer.  How would the girls react to this?  Would it cause them even more fear?

But then I realized that perhaps they really needed this….that they needed to be around other kids who have walked in their shoes…that they needed counselors who were prepared to talk about things that perhaps they didn’t feel comfortable talking about with us.  And so I said yes….

Today when we arrived to drop them off at the bus, the counselors couldn’t have been more lovely – they were energized and oh-so-kind to the kids.  This camp has a 1 to 2 counselor to camper ratio and each of the counselors is very special (you have to be a very special person to want to work at a camp like this).

As we were standing around, I noticed that one of the campers in the same group as my girls was showing pictures of her family to a counselor.  My first reaction was “oy – I completely didn’t think to pack any pictures” but after I got over my “bad mother” feeling – I peeked over the girl’s shoulder to see the family pictures.  As she was flipping through the photos, one of them took my breath away – it was a photo of a tombstone.  It hit me - this photo was this little girl’s picture of her parent.   I then became angry – why did this precious child have to face this tragedy?   What the hell is going on with this terrible disease?  Why can’t we stop it?  I vowed that I would do everything imaginable, no matter how difficult, so that my little girls would not have to bring that same picture with them.

Although it has been several hours since I saw that picture, I am still reeling.   But now it’s time to pop my chemo pills (we’ve upped my dose, which has been rough) and life goes on.   And – it all comes back to hope.  I’ve got to shake off the fear and replace it with hope.

Speaking of hope – Prop 29 ballots are still being counted.  As of yesterday afternoon, we were 16,778 votes behind with 425,000 left to count….  Please send all of your positive energy and prayers to California.  We may win yet!

FATHER'S DAY FUND IN THE NEWS

Huge kudos to the guys at Pacific Merchant Shipping Association who pitched the Father's Day Fund website: www.fathersdayfund.org to the SF Chronicle.  It made it into today's Business Section as website of the week.  Check it out:  http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2012/06/10/BUOO1OV8LG.DTL

The story also made it into the Supply Chain Management Review.  Here's the link:  http://www.scmr.com/article/ocean_cargo_shipping_associations_plea_for_cancer_research

And - there's a Father's Day Fund banner ad in the Cargo Business Newswire:  http://campaign.r20.constantcontact.com/render?llr=b9hggocab&v=001IKsgF__Br-o-FnRfilM5uI1Wy1jUmbG7uehd8oRmrl2i9FQArl1l96v7AjQtwjnJIVof_IMrl94rYaS2EKaXDvcNTEnKwmAhSmqp4IFTw4vBRYZQRVcdJ7RF5ee9Y0-G5tk32m1sZFpGXuQpuoFG-4F0XuvHpwnohLhjrufeaYehUEapIKbtbQ%3D%3D

Ok - so it's a little odd that the cargo/supply chain folks are touting this - but I LOVE IT!!

I am so grateful to my dear friends at PMSA who are really making a difference.  When I was struck with cancer, they leapt into action, not only to help me but to help everyone out there who has been diagnosed or who has yet to be diagnosed with this devastating disease.  Hats off to you guys!

I hope that this inspires everyone to honor their favorite dad(s) by donating to cancer research this year.  I just informed my dad that once again, he'll be getting a card from me saying that Stanford Cancer Center received a donation in his honor.

Father's Day - Give Him Something That Really Matters

Well – we are doing it again.  For the 4^th year in a row, we are asking folks to reconsider your Father’s Day gift and give your dad something that really matters – a contribution to cancer research. 

As you may recall, this effort was launched following my original cancer diagnosis.  My wonderful friends in the maritime industry decided that enough was enough and that they wanted to step up and inspire as many people as possible to give to help those of us suffering with cancer. 

Their efforts help connect donors with cancer research centers across the country.  Also - with each contribution you can download a card to memorialize your gift for your favorite father - your dad, son, husband, friend, whomever - to let them know a contribution was made in their honor.

There is no overhead for Father's Day Fund, they handle no money and there's no cost to using the service - you are put in direct contact with your cancer research organization of choice.

Many of you have asked what you can do to help me and the family during this difficult time.  Giving to cancer research and convincing everyone you know to give to cancer research instead of buying another necktie for your dad would be the best way that you can help.  My life is solely dependent on cancer research, since the chemos that are commercially available have not worked to keep cancer at bay for any extended period of time.

This whole endeavor works by word of mouth, so please go to www.fathersdayfund.org, make a contribution to a cancer research center as a gift, and pass this along to your friends!  Then tell dad that you have given him the most loving gift you can provide in his honor – the gift of hope to a cancer patient.

Results

So today was a day of results…. a couple not so good….one pretty darn good!

First – I’m sure that all of you have been watching the craziness surrounding Prop 29.   It was winning, then it was “defeated” and then we found out that there were still 1 million votes that hadn’t been counted.  So – with a 63,000 vote spread, winning is actually within our grasp.  We’re all holding our breaths on this one.  I went to bed nervous because of the slide that continued through the night, woke up and was devastated with the morning results but then mid-morning my hope was restored.  We could win this thing.  It will be by the skin of our teeth – but we could actually win this.

It was such an honor to be at the Prop 29 party last night with all of the amazing individuals who put together the campaign.  What a special group of people – with huge hearts and such a desire to help those of us who are fighting this terrible disease.  It lifted my spirits just to be around them.

As you also may be aware, I had my PET/CT scan yesterday.  Finally, at 6 pm tonight I got the call from Margreet with the results. It wasn’t good news. Apparently, there are many tumors in my abdomen (not just 4-5).  They are deep and run along my lymphatic system.  They lit up the PET scan.  Unfortunately, there are too many to operate on or radiate.    Therefore, my only option is chemo.  It wasn’t all bad news though, George is definitely planning on moving forward with the study and it looks like I’m going to be one of the participants.  He still needs to do some administrative tasks around getting final approval, but Margreet assured me that he is committed to moving forward with the study.  We’re not sure when it will begin but hopefully soon.  In the meantime, I will begin a more aggressive chemo program to try to stop the proliferation of the tumors.

When I was telling the girls tonight that I was going to be a part of this upcoming study – they wanted us to explain what that meant.  After hearing that it meant that I was going to try something out and see if it worked so that others may someday use the drugs if they were successful, Ellie asked “what happens if it doesn’t work?”  I explained to her that I’d find another study and would try that study and if that didn’t work I’d just keep finding studies and try until I found something that worked.   She responded by asking, “but how about if none of the studies work?”  I had no answer for her.  After seeing my hesitation, she said, “but the likelihood of that isn’t very much, right mom?”  I answered her simply, “you are right, Ellie.”

Tonight I have to focus on the possibility that the study will work…that I’m being given an amazing opportunity to be a part of a breakthrough that could save hundreds of thousands of lives.  Tomorrow I will call Garrett and start my chemo once again…to keep my tumors in check until my immune system kicks in and gets rid of them….

Tonight I choose to believe in miracles – both for Prop 29 and for me.

Thank you to all of you who were so supportive in our efforts to pass Prop 29.  I was so honored and humbled to be a part of this amazing movement.

The new location for my video

They moved the video.  To see it, go here: http://youtu.be/Hli10tS2A2g


Now - go vote!

My New You Tube Prop 29 Video

We taped this in our backyard yesterday to try to help put a face on Prop 29: http://www.youtube.com/watch?v=VVk0HOFtlEg&feature=youtu.be  

Please feel free to share....

Hope

Last week I informed all of you that my cancer had returned.  I was devastated.  I was up most of the night crying and trying to figure out how I was going to say goodbye to my darling daughters.  The next night, I was scheduled to speak to 500 ACS volunteers in San Jose.  Let’s just say that walking into that room realizing that I was supposed to speak about hope when I wasn’t feeling any, was not easy.

 When I got into the room, I saw George Fisher – who, along with David Veneziano (President of CA ACS) was also scheduled to speak to the crowd.   When I saw him, I asked him about an interesting study taking place at Hadassah Hospital in Jerusalem.  I was wondering if perhaps I should try to get myself enrolled.  He leaned over to me and said “Wait for my speech.  I think I may have something for you.”

That night, George talked about a potential breakthrough in cancer treatment.  It involves combining radiation and certain chemo drugs to train the immune system to recognize cancer as a foreign body and attack it.  He said that this is a game changer for cancer and the most promising breakthrough that he’s seen in his career.  He’d like to start the study right away but of course it comes down to costs.   It will cost $3.5 million for the study.  If they proceed, it could have the impact of saving hundreds of thousands of lives, including mine.  Stanford has been talking about doing this study for the past year but hadn’t had the funding.  In fact, Pat and I heard George talk about this last year and I remember walking up to him following his lecture to ask him whose tushy I needed to kiss to get me into the study.  His response at the time was that they didn’t have the funds to proceed with the study.  His other comment was that I wouldn’t be eligible for the study because I didn’t have multiple tumors.  You needed multiple tumors to qualify.  I then said to him that my goal would be that when they had the money, I would have the tumors.  His retort – “it’s better not to have tumors.” 

But – here we are.  Last Tuesday I found out that I have multiple tumors.  And this Tuesday, California’s voters could make sure that there is the money at Stanford to proceed with the study.  Perhaps my devastating news may not be so devastating.  Perhaps everything is perfectly timed.

It is amazing what hope can do.  I was scheduled to speak directly following George.  As I rehearsed my speech on the way to the event, I broke down in tears at multiple places throughout the speech.  It was hard for me to talk about the future.  But, as George was talking about this magnificent opportunity, my spirit lifted.  As I walked to the stage, I knew I could make it through the speech.  Hope.  That’s all I needed – a little hope.

This is my last opportunity on this blog to beg everyone out there to vote for Prop 29 on Tuesday.  Please – ask your friends, your neighbors, your fellow gym members…..anyone and everyone you know in California to go to the polls and vote.  Research breakthroughs provide those of us fighting this devastating disease with the hope that we need to continue our battle.  I’m not going to go into the many reasons why you should support this or try to address the many many lies that are being spewed by the tobacco companies.  Feel free to go to www.CaliforniansForACure.org where they address every concern that you may have and clearly outline what it is that you’re voting for.

But – at the end of the day, I’m making a personal plea.  The passage of Prop 29 is my best chance to see my children grow up.  Not only will it hopefully save my life, but it will save the lives of hundreds of thousands of other cancer patients.  When you go into the voting booth, please vote yes.  My life depends on it.