Limping Along

Last week, I went to Stanford for my regular PDL-1 infusion and meeting with Dr. Fisher. He gave me the update from my stent surgery the week before. Apparently, they saw cancer in my bladder – but it was the same cancer from the last time that they were in there.  It’s strange how my perspective has changed over the years. I am no longer devastated when they tell me about the cancer in my body – as long as it hasn’t grown or spread.


When I met with Dr. Fisher, I told him that I believed that all was well – I had an explanation for every pain that I was feeling. He told me that while he appreciated my positive attitude, he believed that my cancer was actually growing and that soon we would be moving to a new protocol. There are a few different options – options are a good thing.


I will be getting my next CT scan in mid-January. Once we get a new look, we’ll figure out next steps. I may also reschedule those appointments with the other cancer centers to get their input as to whether they have something innovative for me.


I asked Dr. Fisher whether he was hopeful that there would be new treatment coming out soon. He sadly told me that unfortunately, he didn’t believe that there was anything in the near horizon. I told him that I would continue to limp along until something better came along. His response? “Eve – you are more than limping along – you’re doing great.”


Later this week, it will have been 8 years since I was originally diagnosed in Iowa. It’s truly a miracle that I am not only alive, but working full time, raising my children and fully participating in life. Just last week, as I was happily skiing with the girls in Tahoe, I marveled at how truly remarkable that it was that I was able to ski.  Although, I am in continuous pain, I haven’t let it stop me. Cancer will not stop me from living my life. No limping for me.


I hope that your 2015 is filled with lots of love, happiness and health!

It's Just Made Me Stronger

As you know, the past couple of months have been rough.  Tumor growth in my rectum and my abdomen has resulted in lying-awake-at-night-pounding-on-the-pillow pain from my belly button to my lower back. As you can imagine it's difficult to be on my game when I'm running on empty.

A couple of weeks ago as I tucked Ellie into bed, I looked down at her sweet face and couldn't help but tell her how sorry I was that she had sick mom. That it wasn't right that she had to go through this. She looked up at me and replied, “That’s ok, mom. It’s just made me stronger. I know it isn’t your fault that you have cancer.”

Her response took my breath away. What a wise little girl. She’s probably right – it has made her and Ariel stronger. But – how I wish that they didn’t have to go through this. No child should be so intimately aware of the effects of chemo, the impacts of constant surgeries and the disruption of regular cancer treatment.

As for the latest with me – as you may have figured out – I didn’t have surgery on Wednesday. I ended up pushing it off since my fistula really wasn’t bothering me too much. My surgeon told me that he wasn’t in any hurry to do this life altering surgery and that we could push it off.  Since some of the symptoms have returned, I should probably reschedule it – but I’m not in any hurry to make that call….I’m going to see how long I can go….

But, tomorrow I will be having surgery number 20. We will be changing out the stent in my ureter. While this would normally be a fairly simple surgery, because I have a fistula, it does add a level of complication to it. Hopefully, it’s easy peasy and I’ll be home in time for a late dinner.

Please send me some extra prayers tomorrow as I head into surgery number 20. I am tired from the pain, tired from the never ending struggle. However, I am amazed by my body. How it continues to buck the odds and fight for health. It’s truly remarkable. And – like Ellie – this whole experience has just made me stronger.

2 Weeks of Extreme Stress

The past 2 weeks have been 2 of the roughest that I’ve experienced over the past 7 years.  As I’ve noted earlier, I have been having a significant amount of pain in my back, my tush and my vagina. These pains have kept me from sleeping more than a few hours a night. I have tried narcotics, a chiropractor and a host of other modalities – but finding relief has been elusive.

On Monday, October 13, I went in to Stanford for my regular appointment with Dr. Fisher and to get my PDL-1. I told him about my pain, my thin stools and when they poked around in my vagina, things were not normal. He immediately ordered a CT scan and vaginal ultrasound. We talked about the strong likelihood that these were symptoms of cancer growth and then discussed potential next steps. We were both confidant that once we confirmed “progression of disease” via CT, that I would no longer be able to stay on my wonderful Genentech PDL-1 and we’d have to figure out other options.

 
Unfortunately, the options that he outlined were not promising and every single one of them came with debilitating side effects (massive rash, blisters, etc.) This was devastating.

 
The week was only to get worse. On Tuesday, I continued to have significant problems with my vagina. I contacted my gynecologist who fit me in first thing on Wednesday. Upon examining me he determined that I was now dealing with a rectovaginal fistula. Next to the ostomy bag, this was the nastiest thing imaginable. We believe that when Dr. Fisher’s assistant was examining me that she burst the fistula.

 
The fistula was always a potential side effect from radiation. However, my radiation oncologist tried to be very careful to avoid this. Unfortunately, due to the aggressive nature of my tumor coupled with the weakened tissue from radiation, this created a perfect storm and now I am dealing with this new challenge.

 
Since Stanford’s treatment options were so dismal, I decided that it was time for me to explore other options. I hurriedly set up appointments with UCSD, UCSF, USC, City of Hope, MD Anderson, the Block Center and Cedars Sinai to take place in the next two weeks. I felt the need to “do” something and since I can’t control what’s going on inside, the best I can do is to come up with a plan of action.

 
Dr. Fisher also set me up with an appointment with Dr. Andy Shelton – my amazing colorectal surgeon. Based on the fistula plus the thin stools, Dr. Fisher’s assessment was that I would be looking at putting a permanent ostomy bag on. This was a very very bad week.

 
My fear was debilitating. Amazingly enough, last weekend my job brought me to Pebble Beach for the California Legislative Black Caucus event. One thing that I have learned over the past 7 years is that the African American community is very spiritual. So – over the weekend, several legislators pulled me aside to pray with me. They impressed upon me to replace “fear” with “faith.” They were truly amazing.

 
On Wednesday, I went in for my CT scan and vaginal ultrasound. I received an email from Dr. Fisher that evening informing me that the scan did not show progression of disease. It hadn’t grown or spread – it wasn’t in my liver, it wasn’t in my pancreas. Strangely, they can’t see the tumor in my tush which continues to give me so many problems. But – because the scan showed stable disease, I can officially stay on my Genentech trial. I was stunned. This was not the news that I was expecting – it was beyond my wildest dreams.

On Thursday morning, Pat and I went back to Stanford to meet with Dr. Shelton to talk about my surgery. He confirmed that he did need to put a permanent ostomy bag on, but that it didn’t have to happen within the next week. Furthermore, he said that if I wanted to remove tumor from my abdomen, that he would happily do that as well.

 
It occurred to me that this could be a strange blessing in disguise. Dr. Fisher has wanted to get my tumor analyzed for quite some time – to figure out its genetic makeup and to do some chemo sensitivity analysis. However, all of the diagnostics companies need fresh tumor. Because I haven’t been operable, we have not had the ability to get fresh tissue.  This is our chance. The price is losing my colon – but this opportunity may lead to the lifesaving treatment that we’ve been looking for.

 
Because we don’t have to do the surgery right away (I actually have pushed the surgery to the second week in December so that I can put on CHI’s annual Lifesciences Academy), I have time to arrange the tests with the companies that do the analysis. It also gives me the opportunity to come up with the money to pay for the testing.

 
So – there was some very good news and some not so great news this week. But perhaps, the not so great news will shine a light on my cancer enabling me to continue on my journey.

Prayer Request - Again

So – I had written but had forgotten to post the "Phew" blog until today. That blog post had a lot of good news. Unfortunately, I think I’m heading into a rough patch once again. After seeing the chiropractor 3 times this week, my back is feeling much much better. However, I am continuing to be plagued with stabbing pain in my nether regions and my stools have begun to shrink to pencil thin. These are the same symptoms that I had before they found the tumor in my rectum this past summer.

I am thrown into yet another place of fear, sadness and panic. I will be meeting with Dr. Fisher on Monday for what was to be my regular PDL-1 infusion. However, I may call today and see if we need to push forward with a CT scan.

Oh – how I wish this disease would leave my body.  This rollercoaster of fear is so exhausting. Pain is exhausting. Lack of sleep from pain and fear is exhausting. I can’t help but go back to the question, “Why me?”  I know that’s not a helpful question. I know it’s not a rational question. And I know it’s an unanswerable question.

But – it is one that continuously floods my head.

When I met with the radiation oncologist earlier this week, he told me that I had been very fortunate. A few years ago, the average length of survival for metastatic colon cancer was 10 months to a year. He said that I should be happy that I had so many additional years. Yes – of course I’m happy about that. But his comment made me feel like I am indeed living on borrowed time. 

This weekend, I’m heading to Baltimore for my cousin’s kids’ b’nai mitzvah. I just pray that someday I will get to attend my own girls’ b’nai mitzvah.

We should know more soon. Please send me a little extra prayer this week.

Phew!

So – I just realized that I haven’t updated all of you as to the latest on the journey. As I may have mentioned previously, for the past few months I’ve been experiencing a lot of lower back pain. I hadn’t been able to get it checked because, quite frankly, I didn’t have the time. It was the end of legislative session and my office was in the throes of getting bills passed. Meanwhile, at home we were building a new bedroom and bathroom for our exchange student (who we also had to get situated for her year). Oh, and then there were my existing two girls going back to school, plus repeated trips back and forth to Stanford for cancer treatment. So, my poor back took a “back seat” to everything else. 

But – the pain started screaming louder and louder. Dr. Fisher and his team kept trying solutions – mostly narcotics and other pharmaceutical fixes. He had mentioned getting an MRI in case the pain was due to spine metastasis. However, I kept putting that off. Why? Because frankly, if I had cancer in my spine, I didn’t want to know. Progression of disease means I’d be kicked off of my study. And – as I’ve written before, there aren’t a lot of options if I’m kicked off of my study. So – I lived with the pain and tried to ignore it.

After many sleepless nights, I carved out time to see a chiropractor. I figured this is just old age, so perhaps he can adjust me and off I go!

Interestingly, the day before I went to see the chiropractor, Dr. Fisher’s physician assistant, Dana, texted me just to check in and see how I was doing. I texted her back that my back continued to be in pain but that I’d be going to the chiropractor the following day.

Within seconds, I got a text back saying “no you won’t.” Apparently, when Dr. Fisher and Dana saw that I was thinking about going to a chiropractor they panicked. Without knowing if this was spine mets, getting treatment from a chiropractor could be extremely dangerous. He could end up breaking my spine.  But – Dr. Fisher did not believe that they would find mets. His guess was that my back problems could be chalked up to old age – either a bad disc or sciatica. But – he would not allow anyone to work on me until we had ruled out mets.

The appointment was canceled and I tried to figure out how much longer I could go on with the pain. Finally, a couple of weeks ago, I was down at Stanford for my infusion, and I convinced them to give me an MRI the next morning.

On Tuesday morning I spent two hours in the MRI machine – laying perfectly still. I don’t know if you’ve ever had an MRI, but it is like going into your coffin. I am not a person who has claustrophobia, but I sure as heck felt claustrophobic inside of that machine. 

So – let me cut to the chase – after many days of waiting for the results, I finally received a text from Dana making sure that someone had told me that my MRI was normal. I did not know. Interestingly, I received the text at our pre-Sunday School religious service. And – it came right before we said the shechechiyanu.  The shechechiyanu is the prayer of thanks. How amazing is it that I got that news right then. Furthermore, it came during the 10 days between Rosh Hashanah and Yom Kippur. To me, that meant that I was being inscribed in the Book of Life for the upcoming year.

Prayer

Today, I opened my mail to find a lovely card inside. When I opened the card, there were beautiful messages from many women, none whose names I recognized. I finally noticed who the card was from – the United Methodist Bible Study Group of Nevada, MO. After looking through the names more carefully, I realized that one of the women was the mother of a colleague and dear friend of mine from Southern California. She had told me awhile back that her mother’s prayer group had been praying for me, but it had completely slipped my mind (I’m going to blame the residual effects of chemo brain).

The notes from these women were filled with love, hope, faith and determination. I was overwhelmed with gratitude and quickly began to tear up. These women were praying for me – this little Jewish girl from Davis. They were spending their energy and time to ask God to help me.

But – this is not the first time that people of faith from throughout the world have asked for God’s help for me. Throughout the years, prayer sisters have popped up in the African American community, friends of friends in Israel have prayed for me at the Western Wall and during their marriage ceremonies, friends have lit candles in churches throughout Europe during their travels, I have received water from Lourdes…quite honestly, it has stunned me how many prayers to God have been said throughout the world to help me as I go through my cancer journey.

Recently, I was reminded by one of these prayer warriors that while I thank a lot of folks in my blog – my doctors, my family, my friends – I rarely mention how grateful that I am to God. I was reflecting on that. I know that I ask for prayers on a regular basis from all of you – so it’s not like I’m hiding the fact that I think that God plays a significant role in my healing. I often talk to God – asking for strength – asking for courage – asking to restore my health. I also personally thank God on a regular basis for the many miracles that I have witnessed over the past 7 years that have enabled me to be alive and thriving today.

I do believe in the power of prayer. So – for those of you who are concerned that I haven’t publicly acknowledged God’s role in my healing – I’d like to be clear that I am very grateful to God for bringing me to this day. I don’t know what he/she has in store for me in the future. I hope that it will be a long life. Furthermore, I am so very very grateful for all of your prayers asking God to aid me throughout my journey.

I just realized that I did not tell you about my latest cancer challenge – I had my stent in my ureter changed on Monday. The surgery went without incident – it was only 30 minutes and I was back at home by noon. On Tuesday, I will be returning to Stanford for my next infusion of PDL-1. I’m expecting this to be without incident.  I’ll be back working in Sacramento by mid-afternoon and home to help the girls with homework by that evening.

Thank you, God.

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!

Chai (and the Amgen Tour)

As many of you know, Chai (pronounced  like “hi” with a guttural “h”) means life in Hebrew. According to a mystical tradition in Judaism that assigns a numerological value to Hebrew letters, the letters that make up the word Chai, Het (n) and Yud (‘) add up to the number 18.

This morning, I had surgery number 18. This spiritual number represents good luck (and life) and that’s a very appropriate description of how things went this morning.

Pat and I checked in at 5:30 am for my surgery.  The waiting room was incredibly busy with more than 50 people waiting for surgery. But – as I walked up to the front desk, the attendant greeted me by name – without me introducing myself. I was stunned. She told me that she knew me because I had been there so many times…. Oy!

At 7:15 am I was wheeled into surgery, I was in the recovery room by 8:05 and we were walking out of Stanford by 9 am. Heck – it went so well that I was able to get in a full day of work!

Surgery number 18 certainly lived up to its name - Chai – bringing me a better and longer life!

Oh – and for those of you who want to spend Mother’s Day with our family at the Amgen Tour’s Breakaway Mile, the link is now open for registration at http://www.amgentourofcalifornia.com/breakawaymile.  As I mentioned in an earlier blog post, I have the great honor of being the Breakaway from Cancer Champion in Sacramento. I would love love love to have you all there with me for a marvelous day!

Muddy Shoes

At religious services last week, in preparation for Passover, our Rabbi told a story of two Jews who were part of the departure from Egypt. As they were crossing the parted sea, all they could focus on were their muddy shoes. They kept their heads down, complaining about their shoes as they waded through the mud. Once they made it to the other side, they found their fellow travelers dancing with joy. They then queried why the others were dancing. The response was, of course, that the parting of the sea was a miracle that had saved their lives and enabled their escape from almost certain death by the hand of the Egyptians who were quickly approaching. The men then realized that while they had been focused on the mundane and insignificant problems of their muddy shoes, they had missed the bigger miracle that had just occurred.

As I listened to the story, it hit me how easy it is for me to act like those men with the muddy shoes. I get worked up about a pain here or there or a minor delay with getting treatment, not seeing the bigger picture. There is a miracle happening right here – in my body. I am alive.  But – not just alive, thriving.

Earlier this week, the world lost another incredible cancer warrior, Michelle Taylor Shutzer, who had been battling colon cancer for the past 4 years. I was devastated once again. Although I had never met Michelle, we had been posting on each others’ blogs and Facebook pages, supporting each other on our cancer journeys. Having cancer can be very lonely and to share the experience with others who are going through similar challenges makes it just a little less lonely.

When I learned about Michelle's passing, I called Pat from DC (which is where I’ve been for the past week for work) in tears. He once again brought me back from despair by saying “Eve – it’s not your story! You’re in DC right now and you just went skiing last weekend. You’re not dying!” 

And he was right.  Last week, as I was flying down the slopes at Tahoe, breathing in the breathtaking beauty around me and hearing my daughters’ laughter in my ears, I did recognize how incredibly fortunate I am.  And yesterday, I was out and about looking at the exquisite cherry blossoms which were in full bloom in our nation’s capital.

Unfortunately, too often, I get caught up in muddiness of my shoes and don’t realize what a miracle it is that I am living. In Michelle’s memory and in the spirit of Passover, I am going to renew my commitment to recognizing the miracles and beauty all around me and stop looking down at my shoes.

On Thursday, I’ll be heading back to Stanford for surgery #18 – changing out the stent in my ureter. Fortunately, this should be an easy outpatient surgery. But – if I could ask once again for all of you to send a few prayers my way – I’m sure it wouldn’t hurt having them!

Chag Sameach!

Help Us Make the Magic on May 3rd

Today, I took the girls to a reunion for Camp Kesem. As we were leaving, they turned to me and exclaimed that Camp Kesem was the best camp in the whole world and they couldn’t wait to return this summer.

For those of you who aren’t familiar with Camp Kesem, it is an amazing camp for children who have a parent who is living with cancer or has passed away because of cancer.  It is an incredible place for kids to be able to be around others who understand what they're going through.  

Camp Kesem is a completely student-run organization that puts on a free, week-long summer camp for children whose parents have or have had cancer. They provide children, ages 6-16, with the opportunity to escape the worries they face due to their parent's illness, create a support network of peers and counselors, and rediscover the magic of childhood.  This is truly a blessing both for the children and for the parents who face an incredible amount of physical as well as financial stress with a cancer diagnosis.

On Saturday, May 3^rd, the Camp Kesem UC Davis counselors will be presenting their annual Make the Magic fundraiser at the Veterans Memorial Center in Davis starting at 4 pm. The goal this year is to raise enough money to send 120 children to camp. The cost is $45.00 per person, and includes a sit down dinner, silent auction, live auction, and dessert auction.  (The price goes up to $50.00 after 4/19/14). I should add that I attend a lot of silent auctions and this one is one of the biggest and best that I’ve ever seen.

If you are interested in participating, you can either register directly (see below) or - better yet - let me know and I'll put together a table (or 2).

All you have to do is click on https://campkesem.secure.force.com/events/CnP_PaaS_EVT__ExternalRegistrationPage?event_id=a19i00000011yhWAAQ and select registration for Make the Magic!  Even if you can’t come, please consider gifting the seats to someone else, and be sure to spread the word to family members, friends, and others in your community. (please note that the $50.00 price on the registration page will change to $45.00 if you register prior to 4/19/14)

 Please feel free to contact me if you have any questions or to let me know that you'd like to join us for this very special evening.

Oh – and as for the latest on my cancer journey – I’m finally back on my fabulous PDL-1. Hallelujah!

Have I Got a Great Mother's Day Activity for You!!!

As you start to put away your blue streamers after a crazy Colorectal Cancer Awareness Month, it’s now time to think about the next big holiday – Mother’s Day! If you don’t have plans, I’d love you to consider joining me this year for a very exciting event.

 

The Amgen Tour of California professional cycling race kicks off in Sacramento on Sunday, May 11, and I’ll be part of a special walk called the Breakaway Mile to recognize community members involved in the fight against cancer. The walk is led by a “Breakaway from Cancer” Champion, and I was chosen to fill that role in Sacramento.

 

The race starts and finishes in downtown Sacramento so the hospitality tent will be open all day, starting at 9:30 am.  The race begins at 10:50 am and the walk will take place at about 2:00 pm. (It looks like I’ll be giving some sort of speech about that time.) The finish of the race is at approximately 3:30pm.

 

Patients, survivors, family members and advocates for the cause are all welcome.  Not only do you get to walk on the race course with me just prior to the professional finish, you also have access to a spectacular hospitality area near the finish line.

 

It’s going to be a really fun day (apparently, this is one of the biggest bike races in the country).

 

If you want to read more about the race, go to: http://www.amgentourofcalifornia.com. On April 21^st you will be able to register online for the Breakaway Mile (I will remind you then – or you can just let me know that you’d like to be a part of the support team and I’ll work with the organizer to get you registered.)

 

Here’s some info about Breakaway from Cancer (www.breakawayfromcancer.com)

 

I know it’s not until May, but I wanted to put it out there early because it is Mother’s Day. I truly hope that you and your friends/family will come out and spend a fun day at the Amgen Tour with me!

 

And on the cancer journey front – in less than one week I will be back on my wonderful PDL-1. Friday is the day! I can’t wait.

A Tough Day

Yesterday was a tough day. My plan was to meet with Dr. Fisher and then start back on my wonderful PDL-1. But that was not to be.

Apparently, I had a bladder infection. This is my third infection since getting the stent placed in my ureter in December. There is a strict guidance from Genentech that PDL-1 cannot be taken if you have an infection. Their concern is that since we are playing around with the body’s immune system that they don’t want any confusion about what the immune system should be fighting. There is a safety concern and if something was to go wrong, I could jeopardize the entire trial.

Therefore, they have now put me on a high dose antibiotic for 5 days and then I have to wait another 2 weeks after I finish the antibiotic. That’s another 3 week delay. This is not great. Dr. Fisher wasn’t happy, Maria (my new study coordinator) was upset and I was distraught. My treatment had already been delayed because of paperwork and waiting another 3 weeks is excruciating.

But that wasn’t the end of the bad news. It appears that cancer has now spread in the lining in my diaphragm. This is the first real growth that we’ve seen for over a year. One thing that has been in my favor is that the cancer has never spread to the liver or lungs. With it going in the diaphragm, it is much closer to those sites, which truly scares me.

When I pressed Dr. Fisher as to what could be done, he told me that his hands were tied. We had to follow protocol. None of my efforts to charm him into giving me the drug worked. He told me that if I really really wanted, I could go on chemotherapy, but that he truly believed that PDL-1 was the best option for me and urged me to wait.

As I drove teary-eyed the two hours back to my office in Sacramento, it hit me that I was being so ungrateful. I am lucky that I will have access to this amazing treatment. So many others do not have this opportunity. I continue to live a full life. But, it’s hard. The disappointment was crushing. I had my heart set on finally getting back on treatment and I will have to wait while knowing that the cancer is growing.

My girls could tell something was wrong when I was preoccupied last night. They could tell I had heard bad news, but they have faith that everything will be fine – because it always has been. As Ariel was about to go to bed, she opened her arms wide, climbed onto my lap, gave me the longest, biggest hug imaginable and told me that I was the best mom in the whole wide world.

At the end of a really rough day, she knew exactly what I needed. Ok. I’ll wait. It’s just another 3 weeks. I’ll get my PDL-1 and my body will spring back into action. I just need to be a patient patient. Fortunately, I’m up for the challenge.