I Can Breathe

First, I need to apologize. In my craziness this week, I neglected to update all of you on the results from my CT scan. I realized about mid-week that while I had posted on Facebook, I had neglected to inform all of you. And then my week got away from me. It is now Sunday, and I am finally sitting down to give you all the news from last Monday.

On Monday morning, bright and early, I was at Stanford for my CT scan. I was jittery knowing that this was a critical day and the outcomes could have a profound impact on my life. After my 7 am CT, I worked for awhile and then went to my scheduled appointment with Dr. Fisher at 11:45 to get the results only to find out that he was running at least an hour behind. Finally, at around 1:00 pm, my dear friend, Shelley (she came to hold my hand on Monday) and I were ushered to the back waiting area. After waiting an excruciating amount of time, Amanda, the woman who works on the PDL1 study, came in to see me. She told me that while she could not officially tell me anything, she believed that I was going to get an infusion of my wonderful PDL1 that day. Basically, she was cryptically telling me that my tumors had stayed stable and I wasn’t going to be kicked off of the study. I began to cry with joy and relief. Shelley then began to cry. Amanda then started to tear up. Dana, Dr. Fisher’s right hand, walked in to give us the “official” news – the tumors had stayed stable and in fact a few of them had actually decreased in size. Furthermore, my blood work showed that had my cancer indicator number had dropped from 72 to 54 in 3 weeks. This is a very significant decrease.   We were all overwhelmed with happiness. Amanda and Dana told us that they had been on pins and needles for the past couple of weeks because they were so concerned about what the CT would show following the my most recent PET/CT.

Dr. Fisher entered the room with a HUGE smile on his face. The room was joyous knowing that we were not about to change direction. He did offer a couple of more options to have in my back pocket should I no longer get to stay on the trial (neither of the new options were promising – so hopefully I won’t every have to tell you about them). Fortunately, I was given clearance to get my infusion of PDL1 and I spent the afternoon happily soaking in my amazing drug.

Directly following my infusion, I jumped in my car and even made it back to Sacramento in time to put on a whiskey tasting fundraiser for an Assemblymember!

My next scan is not for another 3 months. I feel like that gives me a chance to breathe. I am incredibly relieved that my tumors did not grow, that the PET/CT was picking up other activity besides cancer growth. 

In other good news, the pain in my tush is slowly decreasing and I’m not in constant overwhelming pain. I am definitely looking forward to the day that the pain is no longer such a significant part of my life. But, I’m not complaining – my tumors are stable (which, for me, is all that really matters)!

Thank you all for your heartfelt prayers, positive thoughts, love and amazing energy. I just know that having you all by my side was the reason that I received such phenomenal news on Monday. I am filled with gratitude.

Monday

Thinking about this coming Monday takes my breath away. It is on that day that my life could change. Spoiler alert – I don’t want my life to change.

To get you all up to speed….

As you know, I had a tumor that was discovered in the scar tissue in my tush. The problem was that in order to radiate it effectively, they needed to see it on scan. So a few weeks ago, I took both a PET/CT scan and an MRI with radiation. Fortunately, they were able to locate the tumor and I commenced a 10 round radiation program on July 14. The radiation oncologist was wonderful working with my schedule. He even planned for 2 rounds of radiation on the 17^th so that I could fly down to San Diego that evening. I had to present to my board the following morning and I was holding a fundraiser for the Assembly speaker that afternoon. Amazingly, everything went off without a hitch. I can’t tell you how incredible it was that he was able to work with me – although he did think I was a little nuts.

Unfortunately, the PET/CT scan showed a lot more activity than my previous PET/CT.  This is very concerning for everyone since it could indicate significant cancer growth. So – on Monday, I will be given a regular CT to see if there is growth or if what was lighting up the CT was only inflammation. If my CT shows growth, I will be kicked off of my wonderful Genentech trial with PDL-1. My options at that point are not encouraging. They basically consist of 3 potential paths forward:

1. Go on a trial called CTLA4 – this would inject another immunotherapy directly into a tumor and then we’d blast it with radiation with the hope that it would ignite my immune system to go after the cancer throughout my body (very similar conceptually to what we’ve been doing). Unfortunately, there aren’t great stats that show that this will work on colon cancer.
2. Go on another trial with a name I can’t remember – there is a small company with a single product that they are considering for me. Unfortunately, the trial is in Phase 1, so there are hardly any results.  Also – this trial would entail me going down to Stanford twice a week for 6 weeks for a 4-6 hour infusion. Pretty awful sounding with no encouraging stats to make me excited about putting myself through it.
3. Go back on chemo

So – as you can see, I am really really praying that the CT scan shows stable disease and that I won’t be contemplating any of the 3 options above. If it doesn’t show stable disease, I will most likely try to find out if there are other options with other cancer centers.

I am also continuing to be in a lot of pain from the radiation. They said that the pain should begin to dissipate after a few weeks. It can’t come soon enough. I’m having trouble sleeping because of the pain and that makes dealing with all of this uncertainty even more difficult.

Now you are all up to speed on the latest.  I hate to ask it again, but I need your prayers over the next several days. I’m scared right now. I’m tired right now. I need your strength.  I need your love. I need your faith and hope.

I Want to Be Old

Over the last few years I’ve noticed an interesting reversal of how I see elderly people. I’m jealous of them. While others covet youth, I covet old age.  When I see an elderly person, I say a little prayer that someday I, too, will be old. I can hardly wait for each birthday.  While I love having young girls, I want to see them grow up – I want to suffer through teenage years. I want to be there for the boy trouble, the skin problems and the teenage girl drama.

So – this week, I’ll head back down to Stanford for an MRI and PET/CT scan. They are having trouble pinpointing my tumor using a regular CT scan and they need to know where it is in order to radiate it. I want them to figure it out – fast. I am in extreme pain every day and I can’t wait to begin the radiation.

They also don’t want to radiate the tumor quickly. Because the tumor is about 3-5 cm up from my rear, they have to be very careful. They don’t want to burn a hole through anything down there. I’m not going to describe what can happen when a hole is created – but it’s not pretty.

Going slow means that I will be going to Stanford daily for 2-4 weeks (depending on what they see this week with the tests) for radiation. I hope to begin on July 14. Fortunately, we’re doing this while the legislature is on recess. I’ve had to cancel a couple of vacation plans, but that’s ok. I’m just glad that no one is talking about excising body parts at this point or kicking me off of the PDL-1 study.

When I was complaining about the amount of time that the radiation was going to take, my radiation oncologist, Dr. Albert Koong, looked at me and said, “Eve – I want to go slow so that you don’t have problems 10 years down the line.” While I wasn’t crazy about the amount of time that it will take for the treatment -  it was like music to my ears to hear him use the phrase “10 years down the line.”

We’re hopeful that the radiation coupled with the PDL-1 will jump start my immune system once again. Our fingers and toes are crossed that this will be the magic that we’ve been waiting for. I so want to rid my body of disease.

I’m looking forward to getting old. I’m looking forward to everything that comes with getting old. Because then I will have lived long enough to have raised my girls – which is, by far, my most important goal.

Bring on the birthdays!

Healing Ceremony and Some Tough News

It has taken me a couple of weeks to sit down and tell you all about the wonderful healing ceremony that we held at our home. I’ve been very busy with the end of school, getting the kids ready for camp, the bill deadlines for the legislative session and the pain that I’ve been experiencing.

As a quick recap, Rabbi Wolfe did an absolutely lovely job of leading the ceremony – drawing in everyone. We burned that terrible document that spoke to my demise. We planted a pomegranate tree on top of the ashes. We shared love and laughter and some sorrow. The highlight of the day was when my dear friend from childhood, Sarah Tunik, read a poem that she had written for the occasion (inspired by Maya Angelou’s Still I Rise ):

You may write me off as history

With your fancy charts that lie

You may quote the stats and frequencies
But still, the outlier, I'll rise.
 
Does my confidence surprise you?
Why are you beset with gloom?
'Cause I walk like I've got life
instead of calling  for my tomb.
 

Just like moons and like suns,

With the certainty of tides,
Just like hopes springing high,
Still I'll rise.
 
Did you expect to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.
 
You may write about my ending,
You may cut out my insides,
You may radiate and then sedate,
But still, like air, I'll rise.
 
Does my longevity shock you?
Does it come as a surprise?
That when you read my stars
I made ashes from the lies?
 
Out of the fire,
I rise
Up from a hospital bed
I rise
I'm a great field of chodosh[1], wheat
Bending and blowing, to grow and not beat
There will be no harvest; I count my own days
I rise
Up from the fire, with spark and with praise
I rise
Bringing the strength of friends wide and near

I still survive, with hope, and not fear.

I rise
I rise
I rise.
 

As part of the ceremony, Ellie wrote a poem that she shared with everyone:

 

Health can come from drugs and drugs,

But it could also come from love and hugs.
Health can come from praying, too.
But in this service, it comes from all of you.
 
A huge thank you to everyone who was able to join us for the ceremony. It meant so much to our family to have so many friends envelope us with their support.
 
In other news, many of you are aware that I’ve been in a significant amount of pain for the last couple of months. We had many possible causes for the pain: internal hemorrhoids, nerve damage from past surgeries, scar tissue, shortened colon issues, potential new food allergies. I went in for a CT to try to figure out what it was, but nothing showed up on the CT. I finally convinced the colorectal surgeon to order a colonoscopy.
 
On Thursday I went in for the colonoscopy. The doctor was sure that we wouldn’t see any cancer since nothing had been seen on the CT scan. Unfortunately, he was wrong. Hiding in my scar tissue was a tumor that measured 2-3 cm in size. The mystery was solved as to why I was in so much pain.
 
This is not good. I don’t know what the next steps will be. My prayer is that we can come up with an option that does not involve removing my colon. I’m guessing that we will begin with radiation – which doesn’t sound pleasant, but it would be a heck of a lot better than removing my colon.  I also hope to stay on my wonderful trial.
 
On Tuesday, I’ll be meeting with Dr. Fisher to discuss his recommendations for next steps. While this tumor is causing a lot of pain, it is not in a vital organ. People live without colons. The main goal is to live.
 
I’m so tired of the struggle. Fortunately, the healing ceremony came at the right time. I need the strength of others to pull me through this difficult time. Please keep me in your prayers. I have a feeling that I don’t have an easy road ahead and I will be leaning on all of you to support me as I conquer this new challenge.Health can come from drugs and drugs,
But it could also come from love and hugs.
Health can come from praying,too,
But in this service, it comes from all of you"Health can come from drugs and drugs,
But it could also come from love and hugs.
Health can come from praying,too,
But in this service, it comes from all of you.""Health can come from drugs and drugs,
But it could also come from love and hugs.
Health can come from praying,too,
But in this service, it comes from all of you."

---

[1] “chodosh” is wheat, not to be eaten before the counting of the omer is finished

It’s Father’s Day Fund Time Again!

So – it snuck up on us this year. It’s time to give your father a meaningful gift (since he really doesn’t need another tie). For the umpteenth year in a row, my dear friends at PMSA continue to promote their brilliant idea of giving to cancer research in honor of your father instead of spending your money on just more “stuff” for dad.

As you may recall, 6 years ago, the Father’s Day Fund was originally inspired by my initial cancer diagnosis.  The goal is to connect donors with cancer research institutions throughout the country.  You just click through their website and all of your money goes directly to the cancer institutions. None of your money goes to administrative costs. And – they provide you with a lovely card to print out and give to your father.

While there are many promising discoveries out there, unfortunately, the possibility of “cure” for me is remote.  Cancer institutions are experiencing an extreme reduction of both public funding (NIH dollars) and private venture capital dollars. It is a dire time in cancer research – funding is decreasing while the number of cases of cancer continues to rise. We need to figure out how to stop this disease in its tracks.

I hope to celebrate many Father’s Days in the future with both my own dad and Pat.  The only way that this will come to be is if there is significant new research in the cancer arena.

Please help spread the word! With Father’s Day on Sunday – we don’t have a lot of time!  To make a contribution, go to www.fathersdayfund.org. Go there now – don’t hesitate – just go!

(Oh – and I haven’t forgotten to write about my wonderful healing ceremony, but I’ll save that for another day since Father’s Day is here!)

Healing Rituals

In February my Sacramento-based acupuncturist passed away unexpectedly. I wrote about this in my blog at the time…how devastating this was to his loved ones and to his patients, including me. But at the time, I didn’t write about one of the shocking events that happened after his death. I didn’t want to focus on it. 

But today I need to.

You see, when he died, his office sent me all of his files on me. I wasn't aware that he had kept from me an "Ayurvedic chart" that he had commissioned to tell my fate. This reading, based on birth date and time, said I was going to die as early as next July. While he had given me part of the chart when he was alive, he had compassionately not shown me this. Of course I have known over the past 6 ½ years that my life expectancy isn’t great, but seeing the date of my demise written down on a piece of paper – well – it took my breath away when I read it. 

Panic stricken, I talked to our rabbi in Davis, Rabbi Wolfe, who counseled me that Judaism does not subscribe to this sort of thinking. We do not believe that your fate is predetermined based on birthdate and time. We believe that the individual has the opportunity to impact his/her fate throughout life. Rabbi Wolfe then counseled me to burn the chart.  He has kindly offered to do the burning with me and combine it with a healing ceremony.

We have decided to have the burning/healing ceremony next Sunday, June 8 at our home in Davis at around 4:30 pm. You are all more than welcome to come – although no one should feel obligated! Just let us know if you’re planning to join so that I can plan accordingly. As a Jewish mama, I want to make sure that there is plenty of food and beverages for everyone!

In other wonderful healing ritual news, my dear friend Miriam Ferris (she’s the woman who took me for my first time to the mikvah), asked her challah baking group to bake challah for me for this week’s Shabbat. Apparently, if 40 women or more bake challah and pray on behalf of someone, it is a very powerful force. Every Thursday, her group gets a text telling them who to pray for as they are baking. She asked the coordinator to put my name in for this week because she knew I was in crisis (which I’ll explain in a minute). This week was my week for women around the world baking challah and praying for my speedy recovery. In addition, my friend Alan Caplan has his synagogue in Israel praying for me during their daily prayers. They are planning to say a special prayer during a ritual that they’ll be doing for Alan's newborn daughter. I feel so blessed to have these very special prayers being said for me as I continue on this difficult journey.

So – why the increased requests for prayers this week? Over the last several weeks, I have been experiencing significant pain and symptoms that seemed to indicate that I had a renewed blockage in my colon. The pain continued to worsen and became so bad that I finally called Stanford. They scheduled me for an emergency CT scan. On my way down, I knew that there was a possibility that I would be placed in the hospital that afternoon for emergency surgery which would most likely result in a permanent ostomy bag. As you may recall, my colorectal surgeon had told me not to get any more cancer in my colon because he had no more colon to cut! He told me that the next time he had to operate that he’d have to put on a permanent bag. I was full of dread.

Fortunately, I was wrong. My colon wasn’t blocked with cancer. They don’t know what has been causing the pain – but it doesn’t seem to be cancer.  Although I haven’t received the official report, it appears that there has been very little cancer growth – a lymph node next to my aorta grew by a few millimeters and there was only a small additional tumor. Otherwise, everything else looked stable including my lungs and liver which continue to be normal. Thank goodness I’m not sporting a permanent bag right now, and we continue to seek the source of the pain.

On Monday I am scheduled for my next PDL-1 infusion. It’s doing its job keeping cancer in check. I hope to see many of you next Sunday where we will have a chance to snuff out that terrible document that speaks to my demise and reaffirm that we all have power to impact our fate!

It's Almost Here!!

In less than 1 week, we’ll be celebrating Mother’s Day at the famous Amgen Tour.  As I blogged previously, there is a wonderful component to the day, the Breakaway from Cancer Mile. I am so honored that I will be representing all of the cancer warriors at this exciting event.

Next Sunday, May 11 the Breakaway Mile will take place in Sacramento prior to the conclusion of the race on the professional stage of the Amgen Tour of California. 

The event opens at 9:30am at the Breakaway from Cancer Hospitality tent. In addition to the Breakaway Mile, there will be many festivities in Sacramento throughout the day, including the Lifestyle Festival which beings at 9:30 a.m. The race begins at 10:50 a.m. and is expected to finish around 3:45 p.m.  The Breakaway Mile will take place at 2:00 p.m. where I’ll be speaking.  All participants must check-in at the hospitality tent by 1:30 p.m. 

By participating in this event, you will get to attend all of the events (including a special viewing area for the Amgen Tour finish).  Amgen is pleased to invite you as its guest to view the professional race from this private viewing area, complete with food and refreshments.

The Breakaway Mile walk will follow a short route that starts and ends at the finish line. 

Pat, the girls and I would so love to have friends and family join us for this very special day honoring those who are currently battling cancer, the survivors and the phenomenal caregivers. For those of you who don’t know us, but read my blog – I’d love you to come, too!

To register, go to: http://www.amgentourofcalifornia.com/breakawaymile. 

Don’t hesitate – just come!