Surgery #13...and #14

I'm exhausted tonight, so I'm just going to give you all the basic facts. Yesterday's surgery (to put the stent in my kidney) did not go well. The tumor was pressing so hard on the ureter that they were unable to put the stent in. There was only a 10% chance things would go wrong. Unfortunately, I was in that 10%. They also found a mass in my bladder. They removed the mass and sent it to pathology to see if it is a tumor. Needless to say, it was a pretty bad night and I didn't sleep well (thus my need to quickly write you and then go to bed).

The problem is that my urine is truly caught in this kidney. They need to get it out quickly or I will lose the kidney. Therefore, tomorrow I will be heading to Stanford for surgery #13 - to put in a nephrostomy tube which will drain my kidney immediately. Unfortunately, I'll also be left with a bag. Draining the kidney will give us a little breathing room to figure out what to do next.

I'm pretty sad right now. It was a rough night and today was rough, too. Tomorrow night at this time I'll have a bag (at least it won't be a colostomy bag). The hope is that they won't have to leave the bag on too long. My colleague suggested that I bedazzle it - because everything looks better with glitter!

So - off I go for Surgery #14. I'll be spending the night at Stanford, but should be back on Thursday morning. This rollercoaster ride never ends....

Miracles and Gratitude

Last night, the first night of Chanukah, we began the celebration of miracles. Today was Thanksgiving – when we as a nation focus on gratitude. What an amazing combination and so poignant at this stage in my cancer journey.

Over the last few days I’ve had a constant stream of e-mails and texts with my oncologists regarding last Friday’s CT scan. Yes, the five tumors that have stubbornly refused to leave my gut for the past year are stable (a couple went up a little, a couple went down and one stayed the same size). And most significantly, no new tumors have emerged.

I’ve been struggling with this disease for so long. Each time that I went off chemo the cancer would come back with a vengeance. But now, I have the incredible opportunity to be a pioneer in this new world of immunotherapy. Not only did it work while we put “PDL-1” in my body every three weeks, but we just proved that it taught my immune system how to recognize cancer and stop it from growing.

One of the tumors that grew just a little bit is pressing against my kidney and is creating a blockage. So – next week I’ll be going down to Stanford for outpatient surgery to put a stent in to make sure that I don’t lose my kidney. But that’s no big deal. That I can handle. That isn’t threatening my life or forcing me to revisit chemo.

The doctors are planning for me to go another three months without treatment and do another CT scan then. A friend asked me the other night “so how long do they think it will work?” No one knows. I’m the one creating the data that will inform everyone who comes after me. It’s a scary place to be, but an exciting place, too. My body is making history by fighting cancer and winning.

It’s truly a miracle. We are entering a whole new world for cancer care. I am filled with gratitude today – for Stanford Cancer Center, for Drs. Fisher and Kohrt, for Genentech, for my family, for my friends, for my colleagues, for my many other doctors, and for my phenomenally tough body that continues to amaze me. 

Happy Thanksgivukkah.

46

Last Wednesday, I hit the big “46.” It has been almost 6 years since my diagnosis. Little did I know on my 40^th birthday that I would soon be starting the toughest and longest battle of my life.  But here I am. Living a full life. Defying the odds.

Many of you know that last Friday I went in for my 3 month CT scan. I was going to wait to tell you the results until I knew more, but I’ve decided to go ahead and share what I know….

The results of my 3 months without treatment are mixed. Apparently, some of the tumors are bigger, some are smaller.  Dr. Kohrt said that by measurement, the disease is stable. The biggest concern is that there is a tumor in my abdomen that is blocking one of my kidneys.  Apparently, they need to get rid of the blockage or there is a potential that I could lose a kidney.

Unfortunately, that’s all I know now. I am waiting for direction from my fabulous team. They are looking at multiple options for next steps and hopefully I’ll know soon what our next course of treatment will be.

As we get closer to Thanksgiving day, I keep reminding myself how grateful that I am for my amazing family and friends and my extraordinary healthcare. The fact that Dr. Kohrt e-mailed me over the weekend just because he knew that I’d be nervous about my results speaks volumes about the phenomenal team that I have working on me.

Thank you all for praying for me, sending me positive energy and quite frankly, just for being there. I don’t know what the future brings, but I know that because of my incredible support network, I’ll be just fine, whatever is in store.

 

Keeping Busy

As many of you know, I lead a very busy life – I have a high stress job that has many evening events, have enrolled the girls in many activities, love spending time with friends, am involved in cancer-fighting causes and, of course, am running back and forth to Stanford for cancer treatment. 

I realize that I’m fairly frenetic.  Everyone tells me to slow down and relax.  Breathe.  Meditate.  Just Be.

But – it’s my coping mechanism.  If I’m constantly busy, then I don’t have time to think about my fears.  I don’t have time to think about what may come to be.  I don’t have time to think about not being here for my children.

Every time that I do stop, I feel fear clench at my chest.  Different pains pop up that make me crazy with the belief that they are tumors.  When I run around, I don’t notice pain.  I forget about my fear.  I’m focused on the task at hand and don’t wallow in my grief or make myself crazy with self-pity.

Being forced to stop and think during Yom Kippur is both a blessing and a curse.  I so want to be inscribed in the book of life for next year, but then I question whether I have done or am doing the things that I should be doing that would make me worthy of getting to live for another year. 

Did I attend synagogue regularly?  No.  Did I eat right?  Not really.  Did I exercise as often as I should have? No.  Did I engage in tikkun olam (healing of the world) over the past year?  Not enough.  Did I spend enough time with my daughters helping them to grow into amazing children?  No – but thank goodness they became amazing in spite of me.

These are the thoughts that go through my head.  My chest tightens up just writing this.  As we embark on the year 5774, I vow that if I’m given another year that I’ll be better.  I’ll stop running from event to event.  I’ll take time for me and for my family.  And when I’m with my family, I won’t just spend the time driving from errand to errand or activity to activity.  I’ll take the time to stop and just be. 

I have 2 months before my next CT scan.  Perhaps I should just focus on that time frame.  I’ll start there.  I have 2 months to focus on healthy living – eating right, exercise, family, breathing.  In two months, I’ll know whether my body has been able to fight the tumors without medication.  I’m really scared right now.  But – rather than react by adding to my “to do” list, I’m going to react by taking unimportant items off of that list.   I’m going to focus on the items that really matter.

I have been blessed with a strong body and phenomenal medical care.  It’s time for me to refocus on my healing and give myself the best chance of seeing 5775.

Happy New Year.

A Mixed Bag

I’m going to warn all of you.  This will be a very disjointed post.  It represents the uncertainty and craziness of this cancer journey.  I’m in a strange place – where there are a lot of unknowns and not a lot of answers.  We are looking at many different options because there isn’t a clear path forward.  Just wanted to start this off with that word of warning for the confusion that is about to ensue...

I must apologize for the delay in giving you all the results of last Monday’s CT.  I had a crazy week.  After leaving Stanford on Tuesday, I had to rush back to Sacramento for meetings and a work dinner.  And on went the week without a minute of pause. I finally arrived home late on Friday night and – quite honestly – I wasn’t up to doing anything but watching “How to Lose a Guy in 10 Days.”  If you haven’t seen this movie – I highly recommend it.  It’s hilarious.  And yesterday was spent running around doing a million errands. 

Enough with the excuses.  In a nutshell – my results overall were good.  On the positive side, there was no tumor growth.  My current tumors didn’t get any larger (not even a mm) and there was no sign of new tumors.  This is tremendous news.  It proves that the treatment is continuing to work.

However, on the not-so-great side, my tumors did not decrease either.  Interestingly, because my tumors neither increased nor decreased, Stanford is not able to make a case to Genentech to keep me on the study.    

But, remember the other study I had written about?! When I asked about it, I was told that unfortunately they have lost $3 million of the funding. The donor’s loved one passed and so he is no longer inspired to give to support the study.  Stanford is trying to regroup quickly and find a way to fill this enormous funding gap.  Have any ideas? 

I am not joking.  If you have any suggestions or know of any donors that are looking for an opportunity to fund a phenomenal study, let me know. 

Basically, the study consists of 4 different parts.  The phase that I’m most interested in would combine infusing PDL-1 with injections of ipi directly into the tumors.  As I stated in my last blog – they believe that this will increase the efficacy of the drugs while dramatically decreasing the toxicity levels. I have all of the information on the study and would be thrilled to connect you/your contacts with Dr. Kohrt.  He would be happy to meet and walk through it with anyone who may be able to help.  At the end of one of his recent emails to me, he wrote “I promised everyone, you and all the patients, that I will make this happen.  Even if I need to go beg on the streets.”  I really adore him.

Since that study isn’t funded and I’ve finished my 16 rounds with Genentech—and I’ve gone through all of the chemos out there—our plan is to watch and see how my body does without any drugs for the next 3 months.  If the tumors increase over the next 3 months, they will go back to Genentech and ask to put me back on the study as a ‘compassionate use’ since we know that the treatment works for me.

Drs. Fisher and Kohrt have promised to watch me carefully over the 3 months. They are concerned because my CEA has continued to rise (normally indicating cancer growth).  They have told me that they’ll give me a CT earlier if they believe things are escalating.

This is a remarkable time.  I will no longer have drugs to fight this disease.  I will have to call upon all of the non-western medicine that I have learned over the past 5 ½ years to get me through this – prayer, acupuncture, breathing, green leafy vegetables, yoga (my knee surgeon just cleared me to do yoga!), reiki and a lot of laughter.  

Over the next 3 months, we’ll see what my body can do. I feel both scared and elated. I feel like a child learning to ride a bike when the training wheels are taken off.  Hopefully, that bike will stay upright.

And – that dinner that I rushed to after my final round of PDL-1 on Tuesday?  Interestingly enough, it was with some executives at Onyx to discuss the legislative year.  During the dinner, I told them about my journey.  With excitement, they told me about one of their drugs and its potential use for colon cancer in combination with PDL-1. When I told Drs. Fisher and Kohrt about this new possibility, they were very interested in exploring this option and are now following up with Onyx. 

 

You never know what’s around the next corner…

 

Scanxiety

Tomorrow, early on a Monday morning, I will be back at Stanford for my next CT scan.  No matter how many times that I do this, it never gets easier.  I had a fitful night of sleep.  Not knowing whether my entire life is going to change in the blink of an eye is so scary.  What if the tumors have grown?  What if the tumors have spread?  Am I about to be subjected to chemo or surgery?  Or what if the information is worse? 

No matter how fearful tomorrow may be, I remain grateful for this past year.  I had a wonderful, relatively pain free summer (except recovering from the knee surgery from my ski accident).  We recently got back from spending 3 glorious weeks in Europe, visiting the sights of London and enjoying the company of friends and family in Belgium and Spain.  We then headed off to our annual Lair of the Bear trip in the Sierras for a week of rustic fun.  What a blessing to have a relatively worry-free summer without chemo.  This was the first summer since 2007 that I was not taking chemo.  I cannot overemphasize how great it felt.  My hope is that thousands of other cancer patients will also be blessed with the same opportunity to have access to this treatment and will get a little bit of relief from the worry and the chemo. PDL-1 gave me an amazing year of life.  Oh - how I love Stanford and Genentech.

So – what happens next?  We’re not sure.  The standard protocol for patients on PDL-1 is that they are approved for 16 cycles.  I have already had 15.  Officially, I’ll be kicked off of the study after this week.  My oncologists have told me that if tomorrow’s scan shows that the tumors are holding steady or decreasing in size, that they will go back to Genentech and request that I remain on the study.  If Genentech turns them down, then they are considering putting me on an investigator-funded study (paid for by Stanford) that they are about to launch which would combine PDL-1 with a drug by Bristol-Myers Squibb called Ipilimumab (known as ipi).  While ipi has been infused in the past, because of the high level of toxicity associated with this delivery system, Stanford is planning to inject ipi directly into the tumors.  This will act much like the radiation treatment that I had back in February, which broke down the tumors so that the immune system has “bite sized” pieces to absorb and learn from.  Stanford is the only cancer institute in the world that will be doing this protocol.  It looks like I'll continue to be one of the guinea pigs of colon cancer....

Of course, my biggest concern is that the tumors grew or spread.  In that case, I’m really not sure what the plan will be.  Fortunately, I have the best oncologists a girl could hope to have to create our plan of action.

At 9 am tomorrow, I will be getting my CT scan and then will be meeting with Drs. Fisher and Kohrt to talk about next steps.  (Please send some prayers/good thoughts my way tomorrow morning....)

I’ll keep you all posted when I know more – now it’s time for me to get some rest….

Yes- I'm Finally Posting (although I'm having some technical difficulties...)

I know it has been a very very long time since I have written on this blog.  I'm assuming that everyone who is reading this has had to look up my blog, since, for some strange reason, it has stopped forwarding my blog posts and, for the life of me, I don't know what happened.  Because it stopped sending them out, I ended up just not writing anymore because I figured that no one would actually go to the blog and it would be a waste of time.

However, I have been getting emails and calls from many folks who are concerned that they haven't heard any news. Therefore, I've decided to just go ahead and post and hopefully I'll soon figure out how to fix the automatic sending of the blog (BTW - if you know how to fix the RSS feed - please let me know!)

Ok - now that you know why it has been so long since I've posted - I'll give you brief synopsis of the latest and greatest.

Bottom line?  I'm doing great.  My latest scan from around a month ago showed 4 tumors remaining stable in size.  One even went down dramatically (from 1.7 cm to .4 cm).  There has been no spreading and no new growth.  This basically means that the treatment is working and my body is effectively keeping the cancer in check.  Would I have liked to have seen the tumors decrease even more in size (or go away)?  Absolutely.  But, I'll take these  results.  I'm able to remain on my PDL-1 treatment and enjoy my amazing life without any nasty side effects.

So - what's next?  Well, I've been approved for two more rounds of treatment by Genentech (standard for the study is 16 cycles, but my oncologists are asking that Genentech allow me to have a few more rounds to see if we can lessen/eliminate my tumors).  If Genentech says "no" then Stanford has yet another study that they want to try utilizing PDL-1 and they would inject another drug directly into my tumors.  I need to learn more about this, but Dr. Kohrt is very excited about this and is very enthusiastic about trying it out on me.    Stanford is the only cancer center in the world doing this new protocol. And - this one also has NO SIDE EFFECTS!  Have I mentioned how much I love Stanford?

I'll keep you all posted as we know more, but for now, I'm just enjoying feeling great!

I'm also loving my new job fighting for innovation in healthcare.  I get to spend every day focused on something that I truly care about.  What a gift.

I'm also getting to help causes I care about.  Just recently I was honored to speak at the American Cancer Society's annual breakfast which was focused on breakthroughs in cancer research.  It was wonderful making this speech representing both the California Healthcare Institute and as a patient who is a poster child for why it is important to fund cutting edge research.

Most importantly, I've been able to spend time with my wonderful daughters. Just two weeks ago they turned 10 and, against all odds, I'm here to celebrate with them.

As we see the young ladies they've become, Pat and I are both incredibly proud that they are our children.  Living with cancer has made them loving and empathetic.  They have weathered some rough times, but have come out stronger in the end.

There's much more I could write about, but I think I've covered the basics.  Hopefully, I've eased any concerns that any of you had about my well- being and I'll try to blog more often (and if anyone can help me fix my RSS feed, I'd be so grateful).

I hope that all of you are having a glorious summer and living life to its fullest.

Ellie needs help with a puzzle, so I've gotta run....